Pain Fog: Living in spite of Chronic Pain
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Day 45. Alternative Pain Control. 

4/8/2015

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Today I want to talk about alternative treatments to pain management. In a previous post I discussed pain management under a doctor's care. 

In the last twenty years I have tried just about everything, at least once. When you are first experiencing pain there is a period of time when you want to try absolutely everything that is out there.  I think most people go through this phase. If you are lucky, you won't go broke trying it all out, and you may even find something that works.

I will caution you. If you see a practitioner of any kind, who says they can 100% "fix" you, I would walk away. Chronic pain has been around a long time and if they had the absolute cure for it we would all know about it. When you're desperate you will try anything, so perhaps talk it over with a trusted friend or family member, for that sober second thought.

Here are some of the treatments and products I have used.

I have talked about pain control through mindfulness and meditation in previous posts as well as pain control through medication.

I will break this next section down into three parts. Today I am suggesting most of the "at home" hands on approaches to chronic pain.

(1) Heat and Ice
The first thing to try when you are dealing with pain of any kind is the most simple cost free approach of heat and ice. Generally what is recommended is fifteen minutes of ice then fifteen minutes of heat. There are occasions when heat and ice are not appropriate for pain relief, you must know what you are treating so check with a physio, doctor or pharmacist first. I have used hot water bottles for the heat source but now that there are auto-shut-off heating pads, thats usually what I use. I do however have the microwave magic bags that are flexible and work great on the neck and upper back. These types of bags are also great for the freezer. For ice, I use ice packs or bags of frozen peas. Never put it directly on the skin because it can cause skin damage.

(2) Creams, Rubs and Patches
Creams, rubs and patches are still my go to approach when I want some immediate relief. They come in many different names and there are several different formulas.  

The active ingredients in over-the-counter topical pain medications may include: Counterirritants, Substances such as menthol and camphor produce a sensation of hot or cold that may temporarily override your ability to feel your arthritis pain. Examples include Icy Hot and Biofreeze.

Capsaicin causes the burning sensation you associate with chili peppers. Capsaicin creams deplete your nerve cells of a chemical that's important for sending pain messages. Examples include Capzasin and Zostrix.

Salicylates, contain the pain-relieving substance found in aspirin. Examples include Aspercreme and Bengay.

Voltarin gel belongs to the class of medications known as nonsteroidal anti-inflammatory drugs (NSAIDs). It works by reducing pain, swelling, and inflammation.

Natural pain relieving creams I have tried are Arnica, trameel and LivReleif.

I have tried them all extensively and I have found relief with most, however the most effective has been Voltatin for joint and muscle pain and Zostrix for nerve pain. I would ask you to talk to your doctor and or pharmacist before using any of these because it may not be the best solution for you.

(3) Epson Salt Baths
Epson salt baths are another standard practice for me. The heat of the water is soothing and helps with joint pain. According tho the Espon salt council, here is how it works: "Magnesium is a primary component of Epsom salt. It is a mineral that the body needs and, unlike other minerals, is absorbed through the skin as you soak in the bath. The mineral helps relax skeletal muscles by flushing lactic acid buildup in the muscles, which may occur during physical exertion, such as a vigorous workout. Magnesium also plays an important role in the absorption of vitamins in the body. It also helps regulate muscle and nerve function. All of these effects significantly influence muscle soreness, which also affects muscle stiffness."

I use heat and ice to help on a regular basis and bathe daily in an Epson salt bath. I always have voltarin and Zostrix cream nearby and use it frequently. It is important not to rely on one method of pain relief because it seems as though there is not one thing that works one hundred percent of the time. These are tools I use in addition to medication, meditation and so much more. I will discuss other methods in tomorrow's post.
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Day 30. Proving Pain, While Staying Positive. 

3/24/2015

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Researchers have yet to find a way to prove the intensity of someone's pain. Yet we, as patients, are asked on many occasions to do just that. Prove that the pain we are feeling is real and debilitating.

In their paper Proving the Existence of Chronic Pain doctors, Steven G. Yeomans and Jeffrey E. Fitzthum state, "Proving the existence of chronic pain is a challenging task, given the wide variety of patients who present clinically with chronic pain, the large volume of medical literature, and the controversies among professionals. The more that is learned about chronic pain, the more the controversy seems to intensify".

Professionals can't prove it -- yet patients are asked on a regular basis to prove their pain. What is wrong with this picture?

Two of my readers have talked to me this week about the frustration with this. One is being visited by a rehab specialist this week to see if there is "anything" she can do to become employable again. It has been months, she has been seen by two medical doctors, a naturopath, a chiropractor and a rheumatologist and has attended an extensive program for pain management. In each case, nobody suggested she go out and find work, they have agreed at this time she is unable to carry out duties of her job. We go through all of this and mountains of paper work all while being the most vulnerable of our lives. On top of that we are visited by people whose only agenda is to get the insurance company's piece of proof that you can indeed work again.

Another reader has been off work for two years, and has done everything in her power to get back to a job she loved. She has had a very difficult time accepting that this is how her career ends. She too has been to countless medical doctors, physiotherapists, osteopaths, naturopaths, the top pain management doctor in Canada and attended not one, but two pain management programs. She too was visited by the insurance company's representatives to access her abilities, and will be examined by an independent doctor.

I'm not saying that we all deserve to leave work and be paid just because we say we have pain. What I am saying is, nobody knows what a person in this situation goes through. It is difficult enough to accept that you cannot work and are forced to retire, then there are constant threats of losing your financial independence.

All of this happens at a time when you have been off for a while and reality is sinking in that you may never work again. Along with that comes the realization that there are many things in life you may never do again. It is a complicated thought process, which requires time. In the middle of that you probably have a doctor who is not really understanding or too rushed to help you with those feelings, and family who are also mourning the loss of who you were.

For some, depression is a part of chronic pain. According to Harvard Medical School's 2009 Harvard Health Publication, "Some studies suggest that if physicians tested all pain patients for depression, they might discover 60% of currently undetected depression."

That same article suggests, "Pain specialists can improve their practice by learning more about the interactions among psychological, neurological, and hormonal influences that link pain and depression."

It is hard to stand up for yourself when you are dealing with all of those feelings and depressed too. It is easy to give up and not fill out paper work, not answer necessary phone calls, not be a part of your own advocating. It feels a little like kicking someone when they are down.

Canada's public disability insurance, CPP, had an applicant success rate of "43 per cent in 2013-14. Indeed, Canada has one of the highest rejection rates for a disability insurance program among OECD countries." According to Michael Prince who contributed an article to The Globe and Mail on the topic.

So if our own national disability insurance has a rate of only 43%, what then, is the success rate of a private insurance company? I couldn't find any stats on that but you can bet it is not any higher.

The onus is on us to prove what scientists have not been able to prove for years. We are in pain, and we are not able to carry out the duties required to do the job.

There is such a dichotomy here. Everyone tells you to move on, do your best, don't focus on what you can't do, be positive; but if you need the employee insurance plan, you are reminded of what you can't do constantly, and have to prove it.

In a sense, I was lucky. Or at least that's how I choose to look at it. I wasn't working when I got my diagnosis so there was no fighting with my employer's insurance company. It also meant I was left with only CPP which is a pittance compared to what I could have gotten. I left work by quitting, thinking I would go back to work when things settled down. It was a year later when I was diagnosed with a spinal cord injury. To be honest, it was very difficult for me to be without a salary, it added to the feelings of helplessness. I don't think I could have handled dealing with an insurance company on top of everything else. I had a family to raise and a debilitating injury to deal with, and a flurry of doctors and appointments. My hands were full.

To those of you who are dealing with all of that and the insurance company investigation -- I applaud you for your strength, and I encourage you do follow some of these steps.

1. Keep track of doctors appointments, where, when and why,

2. Have a list of prescriptions written out, and photocopied,

3. Keep a point form list of series of events,

4. Have symptoms written in point form,

5. Have a list of what you have given up on a personal level because of pain or illness,

6. List the things you have tried outside of traditional medicine,

7. Have you had to hire help, etc shovelling, cooking, cleaning, if so list it,

8. Keep your lists up to date,

9. Keep your lists out of site and out of mind,

10. Live for today. Don't think about yesterday or worry about tomorrow, see what today will bring.

The reason for all the lists are so you can free your mind and not dwell on those negative things. It is best to be as detached as possible to that. It just is. So in writing it, you have put it aside and pull it out and hand it to those who need it. You don't have to spend the day before an appointment reliving all that negative stuff. It won't make the fact that you have to meet with these people and answer their questions any easier. What is does is make it happen on the day it is happening; not weeks of worrying about it before, and wondering after the fact if you remembered everything.

You are still the same person inside, no matter how damaged your body has become, the essence of you is still there, hang on to it.
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Day 19. Readjusting. 

3/14/2015

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I would certainly say this is a readjusting period for me. I had a surgery in September that was not easy, but it certainly left me feeling better than I had felt for years. That was for about a month. I was basking in the feeling of having fewer restrictions. I could sit longer, stand longer and walk longer. I wasn't anywhere near going to the gym or living like the average person my age but compared to before the surgery I felt wonderful. I was truly grateful for the break from constant pain.

That changed for me on a beautiful fall evening when I decided to get out of the house with Jerri and Barry and of course Whinnie. We had a goal of a fifteen minute walk. It wasn't long into the walk when I went over on my ankle in a very unusual way. It wasn't a trip, I hadn't stumbled, it just happened. What was even more bizarre was as I was looking down at it I couldn't make it move. My ankle stayed that way for what seemed like an eternity, as much as I tried to fix it, it didn't co-operate. Finally I was able to stand again. Barry and Jerri questioned what had just happened, wondering what I had tripped on. Secretly I knew there was a problem, my swollen sprained ankle was the very least of my concern.

When you have a spinal cord injury the signal sometimes doesn't get to the brain. This can mean a quick mishap, like a fall, or I can't always pee when I need to and various other things. It usually corrects itself fairly quickly.

This was different because it left me with back pain, leg pain, and inflamed nerves. I tried to carry on with the hope I had before this happened.

When I went to Toronto for my surgery follow up, the cat was out of the bag. After a brief examination it was clear that I was dealing with a bigger problem. Nerve conduction testing, MRI, and neurological testing confirmed that there are many different areas of nerve entrapment and two discs that have to be removed and replaced with artificial discs as well as rods and screws. For all you medically inclined here is the link that shows an animation of the procedure. 

This is a big surgery, period. However for someone with a spinal injury it adds risk and the recovery is much longer.

This is not the outcome I wanted, not by a long shot. It is what I have to do if I want to try to experience that elusive feeling of freedom I experienced this fall. It was a short period of time but it left me wanting more. I want to have a little more freedom, a little less pain and most importantly not live under the threat of paralysis. Choosing not to have the surgery would be a wait and see game and I'm a proactive person, so surgery it is!

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Day 12. Middle of the Night Country Blues. 

3/7/2015

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The 3AM monster had me by the hand last night and was leading me through the darkness into the pit of fear. I had gotten into bed exhausted and then lay there waiting to sleep. It was not happening and I had used all of my tricks. I had taken Magnesium to help me relax, made sure all light is out of the room, I wasn't too warm (which often keeps me awake or wakes me). I had tried the sleep mediations and it was one of those nights that nothing was working. I had been having some pretty big naps so it wasn't a total surprise I wasn't able to sleep through the pain.

As I was laying there I was thinking about the surgery and allowed my honest feelings to surface.

I'm scared. Scared of the pain I will endure and the length of time I will be dealing with that kind of intensity. However what my most prevalent feeling is a sense of defeat. I had always been proud of the fact that I was able to walk away from a spinal cord rehab centre. Walk away! Granted it was with the aid of a walker but I did walk away. These feelings surfaced briefly in the neurosurgeon's office but I had been pushing them down. In the dark of the night it isn't as easy to dismiss or redirect those feelings. Losing mobility changes everything, and I had gotten it back once. So I'm lying there thinking about what could go wrong, and unfortunately I have real life experience of what happens when a neurosurgery goes wrong.

Let's just say there's a reason I don't allow myself the indulgence of self pity, it doesn't go well. Finally I slapped myself across the face, obviously not literally but it woke me up. I realized I was heading down the road to despair with the flourish of a drunken sailor reaching for another rum.

I promptly got up out of bed and texted to see if my sweet Meg was still up studying for exams and walked out to the living room quieting closing the bedroom door behind me. Meg was awake and we had a nice chat and even through we didn't talk in depth, I suddenly didn't feel so alone in the world. The sound of her voice in the quiet of the night brought me back to reality and living in the moment.

The cycle of negativity was broken and I was back on track again but I didn't want to risk going back into that train of thought again. I needed a distraction! I turned on the television and watched the latest episode of Nashville. There's nothing a little music (even though it's country) and drama can't take your mind off. It felt strangely satisfying to be awake watching a guilty pleasure. I thought about making some popcorn, but really, that would be pushing it wouldn't it?
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Day 8. It takes a village. 

3/3/2015

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Yesterday was one of those days that I used everything in my tank. I have been pretty much home bound since the news of the upcoming surgery -- resting, taking it all in, and creating this website with my daughter, Jerri.

All of that changed yesterday when I ventured out to my Mindful Meditation group in the afternoon and out to a dear friends for dinner to visit with another friend from Australia I hadn't seen in years.

I'm exhausted, but what a great day, truly worth it. Other's kindness always touches me. Our friend Sandy cooked such a beautiful meal so we could all have a nice visit.

I think we all have those people in our lives who just show up. They are there no matter what and we are there in their lives. They are the real friends who pull together to build a shield of warm around each other when either of us are in need.

The foundation of knowing somebody for a really long time helps in these situations. The conversation isn't always about the problem at hand but a knowing glance or an offhand comment or a joke that let's me know that these people have my back, and in my case I mean that literally.

The same group of people were around me thirteen years ago when I went through the first spinal surgery and all it's aftermath. They know, and I know how bad it really can be, yet we are both optimistic that in those thirteen years I have learned what works for me and how to make those in the health profession work to my advantage. I'm older now and won't be taken so completely off guard and I won't have to young children at home scared, and missing their mother.

These woman were the village around me and my young family. The people who stepped in to care for the girls, bring meals, and show their love. How can you ever thank people for that kind of support? I'm not sure, but I do know without a doubt that I was right there for them when their crisis arrived. Lets face it, we all have one. It is just a matter of when and what kind.

It does take a village and I just hope that they know how much I love them and how much their support propelled me, motivated me and kept me moving forward. Thank God for good friends.
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Day 6. Comfort and Friends.

3/1/2015

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We all have our comfy cozy clothes, our "go to uniform" if you will, that we pull on when we need that comfort. It's the type of clothing that has usually been around a while, frayed and soft from being washed repeatedly. When you slip into it there's a silent awe within you.

I spent most of this week in mine.

The next step was Lays chips. I allowed myself the indulgence of the salt and comfort that brings.

And finally and most importantly, I have friends whose smiles and words of encouragement give me that same sense of awe. Last night it was a meeting of those friends, at least the ones who live in the same area as me. We sat, ate and talked. It was deep, meaningful and serious for a while and definitely not all about me, however the laughs came right along with it.

The social component to living with pain is extremely important and sometimes goes by the wayside. It is hard to think about being social when it's difficult to get one foot in front of the other but when your pain is controlled even for a short time seeing friends adds so much to your life. It is worth every bit of the effort to do so.

Let go of the need to have a perfectly clean house, beautifully prepared meal and a week to prepare. Just make it about the people at the table and not what's on the table. And if you have friends like mine, they bring lots to add and it is always delicious and nutritious.

I'm feeling tired today from that little bit of activity, but my spirits are much better and I know they will always be there for me, as I will be for them.
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Day 5. Moving on.

2/28/2015

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I gave myself a deadline.  I could wallow a bit, feel a bit sorry for myself, get all of the negative thoughts out and then I had to move on.  Friday afternoon was my soft deadline and the end of the weekend is the hard deadline.  I chose to do this because if gives me freedom to let it all out but then get on with life afterward.  I have found this to be helpful in the past because I have noticed that if not given a voice the fear, anger, disappointment will raise it's ugly head in some form or another, so I might  as well give it permission.  
Vulnerability is a curious thing.  it is not seen as a positive or even useful emotion in our society.  We are constantly reassured and bolstered up when we are feeling down about anything.  A little soul searching and tears are not the end of the world. I am a honest person, some may say honest to a fault, andI have always felt it important -- yet when it comes to pain, honesty is a funny thing.  When asked "How are you?"  you learn quite quickly who to answer honesty.  Let's face it, no matter how close a friend or family member is nobody, and I mean nobody, wants to talk about somebody's pain all the time.  It is depressing.  I get sick of saying it myself. So I try to be the stoic person who has pain and health issues, but gets on with life anyway. 
 When handed a fresh crisis like this one, I need a little break from being stoic. I need to have a planned break down and let it all hang out, but only for a short time.  It's a slippery slope.  Depression can take hold and you can feel justified in it's existence, so you have to be very careful.  The "poor me's" are unattractive and unproductive so they have to have a lifespan and it has to be short.  

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    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

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