Pain Fog: Living in spite of Chronic Pain
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Day 49. Tomorrow is Day 50!!

4/12/2015

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Tomorrow marks day fifty of my blog. My intention when I started the blog was it would be daily until the surgery date then weekly thereafter. We thought it would be about thirty daily posts, before I switched to weekly. Since my surgery isn't going to happen in April it has meant I continued. I will see where it goes from here, however I want to tell my readers a little bit about who else is reading.

To my surprise there are people reading from forty six different countries! Forty six! That has really kept me writing. Hello to China, Russia, Egypt, United States, Japan, Italy and to the other forty countries, I appreciate you being a part of my journey, and I sincerely hope you stay along for the ride.

Most of my blog visitors have come to me from those of you who have shared my link on Facebook. So thank you for doing that. You may not be in pain yourself but you never know who around you will benefit from the blog. So I am humbly asking if you would share this link today. Remember not all disabilities are visible so there maybe someone reading you page who could benefit.

We are very close to the one thousand reader mark and we thought it would be fun to try to reach it this week. We currently have 952 readers on a regular basis. She this week, share, share, share and let's see if we can reach one thousand. (Click on the Facebook or Twitter icon below to share).
With the physical limitations I have it is fun to be able to reach out to all of you through writing. Knowing I have all those people curious about what I have to say adds interest and responsibility to my day.
I want to thank those of you who have taken the time to leave comments, either privately or on the blog. Knowing you enjoy what I am writing and can learn from some of my experiences makes it very worthwhile.

Finally a positive attitude is more than just glossing everything over, we know that. Together we will stay positive while being real. I look forward to moving forward with all of you and hopefully some of your friends.
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Day 48. You gotta know when to walk away and know when to run‏.

4/11/2015

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I will start today with the most important things I look for in any practitioner. First I look for references from others, who have received effective treatment. What I consider to be another very important part of the relationship is the rapport between us. If I go to a practitioner and I do not feel comfortable or I feel as though they're rushing me or they're not listening to what I have to say, there is no second visit.One thing I know for sure after 20 years is that I'm in charge of my own health, and I look for a practitioner who feels the same way. The next thing I look for is someone with a very upbeat,positive approach. I don't go in there with s long face, whoa is me attitude, humor is a big bonus for me. Consequently, I have a physio and athletic therapist who make me laugh all the time. It's not that we can't have a serious conversation about my health, but it gets to be a bit of a drag dwelling on what's wrong all of the time. Dark humor has kept me going.

One of the things that I have used and continue to use as part of my treatment plan is chiropractic care. Somebody with a spinal cord injury, is generally not a good fit for chiropractic care. What I have learned, is chiropractors these days is various methods of treatment other than manual adjustments. Therefore I have gone to a chiropractor to receive ultrasound, electric muscle stimulation, cold Laser treatment and various other forms of chiropractic care.

Reiki and reflexology, I have found to be very relaxing, and almost meditative for me. While I like both of these treatments I have not found them to make a significant difference. To pain control. I would recommend trying them as they are certainly effective for some.

I feel like over the years I've probably taken every supplement and vitamin known to mankind, I'm not sure if any of that helped me, in any great way but I don't think it hurt me at all. What I would say about taking supplements and vitamins is to do so in the mindful way. I recommend trying one thing at a time and chart progress if you feel there is any.

Another form of treatment that fits both alternative treatment and the medical field is injections for pain. I have used both steroid Injections and natural injections to help with pain. I would have to say that I have found both to be very successful. I have had Cortisone shots in my shoulder, foot, hip and knee. While the injections are quite painful at the time of injection and shortly afterward, they are quite effective. They seem to last about six months.

A natural injection I have used for knee pain is called orthovisc, it can also go under the name of monovisc and synvisc. Here is what the companies who make the product say about it ;

"Orthovisc is one of the hyaluronates used in viscosupplementation. Orthovisc is injected directly into the knee joint to restore the cushioning and lubricating properties of normal joint fluid."

"Synvisc-one replaces the worn out synovial fluid to relieve the pain and improve the knee joint’s ability to act as a natural shock absorber."

This treatment has been excellent for me and I receive an injection as needed which is usually every six to eight months. I have to be inactive for about forty eight hours afterward because it is a little stiff and needs to be iced. I would say it is one of the easiest treatments I have, that has the longest affect.

That's the bulk of the methods I have used for pain control, with the exception of the olive oil detoxes and blue green algae treatments and things like that which I have tried but feel that part of my life was a phase when I didn't realize the importance of dissertation while looking for help.

I know there are many other forms of treatment out there that others have found successful, other than the ones I have spoken about in my six sessions on pain control. If you're reading for the first time you can find the others here.

Controlling pain is complicated. Different types of pain, require different methods of treatment, and everybody is different. There's much to be learned by other people, especially people who have been dealing with chronic pain for a long time. There is also a lot of different treatments today. What I would ask is that you go into this with an open mind, but don't leave your common sense out of the equation.

Desperation can make us try many different things with a hope of finding a successful treatment or cure. Once again I caution you to use your own good judgment and trust your instincts; if you feel something is working for you, and you truly feel better, but if you know that it isn't working,you need to let that go. If you try treatments and they don't work for you, don't beat your self up about it chalk it up to experience.

Finally, if a treatment doesn't work, especially after a practitioner has promised you it would, please don't let it affect your attitude toward your condition. Just because someone can't help you with the method they have tried, doesn't mean you can't be helped. It is easy to let their failure to help create despair. Remember, not all treatments help all people, give things a chance but know when to walk away.
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Day 47. Failure Before Success.

4/10/2015

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I will give brief descriptions here of some of the other treatments I have used, or continue to use. It is not a one size fits all kind of solution, when you have ongoing pain. What works for your friend or family member may not work for you. It may be that you need a different solution. You may also find that what works for you very well for a while, may not be as effective as time goes on. Being open to trying new things and not be too discouraged when they don't work are important factors.

Chronic pain and illness, takes a lot of trial and error. It can be exhausting and frustrating to find the right practitioner at the right time. What I ask is that you bring an open mind but also practice caution, if it is not working for you move on. In moving on, remember that although that method didn't work for you this time it may for somebody else, or for you in the future.

One of the simplest pieces of advice I received was to take magnesium. I remember at the time I was having pretty severe muscle cramping, mostly at night, and my physiotherapist recommended magnesium. I remember thinking magnesium is not going to work for me, she has no idea how bad these leg cramps are. During one of my visits to the rehab hospital, the doctor also suggested I take magnesium. He gave me the scientific proof that magnesium has been studied for muscle cramping and in some cases actually help you sleep better. It was what he said next that was my real motivator for taking the magnesium. He said if the magnesium didn't work that our next step would be injections of Botox into my legs on a regular basis. Suddenly the idea of taking magnesium sounded a whole lot better to me. I started taking it and it worked. Is not a perfect solution and it doesn't take the pain away but it does help relax the muscles. It is a lot easier and less invasive then injections of Botox.

That's just one example of how a closed mind can hurt you in cases where you're not willing to try something. I have to say I'm much more open-minded now. I'm willing to try just about anything. I'm a lot more intelligent and intuitive at finding out what is a good fit for me and what is not.

I feel frustrated by practitioners who won't be clear and honest with the patient. Most are so committed to their own way of doing things that they are not willing to see they can't help everyone with everything.

I went to many doctors before I found out I had a spinal cord injury. I was looking for a solution to the pain and its cause. Almost all of them were quite confident that they had the solution.

I remember one particularly disappointing encounter I had with a naturopath. At first he thought that I had an overgrowth of yeast and I went on the commonly used diet and took quite a number of supplements. With so much eliminated from my diet I did lose weight, therefore I felt better. But the only thing that changed about my pain was it actually had gotten worse. I went back for a follow up appointment and instead of saying I'm not sure what's happening here he proceeded to offer more supplements. He was so convinced that he would be able to cure me that I felt convinced. Moving along to a couple of months later none of the supplements made any difference at all to me and my pain was at an all-time high. The naturopath was clearly frustrated that there was no change in me. So the next line of attack was to ask me to go on another elimination diet. Thankfully shortly thereafter, the medical doctors found that there was a structural problem. I was diagnosed as an incomplete paraplegic with a spinal cord injury. There wasn't anything any doctor could give me to cure that situation. I did, however, go back to the naturopath because I felt it was important for him to know the outcome. I had followed all of his suggestions in the past, I thought I would get a much different response than I did. I was told that there wasn't anything further that he could do to help me and perhaps since I was in the

medical situation that they could help me. I certainly felt disillusioned, but it was an excellent lesson for me to learn; that is trust your gut. What I continue to know for sure is food was not the cause of my pain and I can eliminate anything I want to my diet and it was going to change the amount of pain I have. That's why I feel so frustrated when people connect serious medical situation to what people are eating. I eat a healthy, balanced diet and careful not to jump on any bandwagon with that latest food craze. If my pain was digestive I'm sure I would feel differently about it.

I do want to say here that I'm not speaking generally about naturopathic medicine, because I believe in it. I am speaking more specifically to my situation with this particular naturopath and that time. I have been to naturopaths, and they have been excellent. Let me just say though that I make it perfectly clear that when I am being treated for a condition by naturopath, or any other type of natural practitioner, that is a two way conversation. I will not go on indefinitely while they experiment with many different things. I'm willing to give it an honest effort if it makes sense to me.

Let me tell you a very different story about an naturopath. I met Diana about nine years ago. I went into see her and told her my condition. I was honest about my reservations about naturopaths. I'm not quite sure what she thought about me on her first visit together. I made it clear that I would not be giving up flour, sugar, salt, yeast etc. just to see how it affects me. I asked her to tell me what how she felt she could help me.We had the usual first consultation, and then set an appointment for the next visit. I was very surprised at our next visit that the very first solution she came up with was something I agreed with totally; Chinese acupuncture.

I had had experience with acupuncture in the past. Many of the physiotherapists had used it as part of their treatment with me. I told her that I found it somewhat helpful but it didn't last. She explained the difference between acupuncture used in Physio and acupuncture as used in Chinese medicine. I was going to give it a try. With an open mind, and a caution for knowing when to stop if it wasn't working. That day was the beginning of a very long term relationship. After my first visit, I was a little leery, but in my mind I had committed to at least four treatments before I made a decision. I continued once a week having acupuncture and began to like it more each time. Not only did I feel some pain relief, I felt a sense of well-being that I didn't experience with any other treatment. I'm not really sure when the meditative part of the acupuncture started but it certainly became a big part of my treatment. Diana inserted the needles, dimmed the lights and made sure I was comfortable. When she came back 20 to 25 minutes later she would find me in a complete relaxed state. Many times I went into her office not knowing that I was feeling high strung or stressed and I walked out of there relaxed and able to face the rehabilitation that I was going through.

My relationship with this naturopath is about 10 years right now. I continued with the acupuncture treatments for almost 9 years. She is a very skilled acupuncturist, as I have tried others and have never gotten the same result.

Obviously, we have developed relationship of trust and mutual respect. Over the years I've asked for her treatment for many things. Most of them have been very successful. I'm happy to say that while we discussed dietary options, she never suggested that I do any form of elimination diet.

There have been times over the years when a medical doctor has not been able to solve a problem but my naturopath has. I'll give you one example, my daughter had a tremendous rash it was all over her chest and was creeping up her neck, about to reach her face. We went to our

family doctor and he knew exactly what it was but there was no cure for it. I brought her to the naturopath and with a series of treatments it was completely clear in a week. We were told by our medical doctor the previous week that the rash could last up to three months. She was in grade 3 at the time, you can imagine her embarrassment . She was eternally grateful for the treatment she received and so was I. So I'm not saying medical doctors know everythIng; I am saying I like the term complementary medicine. I feel it's very important to look at all aspects of the self when you're treating a condition. I always talk to my doctor about any other form of treatment. He doesn't always agree but we have intelligent conversation about it. He has seen the benefit of acupuncture through my experience and we learn from each other.

This is a tough subject. I think it's unfair for anybody to say that they can categorically cure somebody if there is no cure for the diagnosis. Number one is buyer beware, even if it's your insurance money be careful that you're not being taken advantage of. We must take full responsibility for our health, and that usually means educating yourself about your disease or condition, without obsessing about it. Choose your practitioners carefully, go in with an open mind, but always remember that trust and respect must be mutual.

So let's talk about some of the other crazy stuff I've tried along the way in my next post.
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Day 46. Athletic Therapy for Non-athletes.

4/9/2015

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Today I am going for one of my newest and most successful forms of treatment. It is called Athletic Therapy. I started this about two years ago, quite by accident. Our local yoga studio offers many forms of care and several professionals have their practice there. I had been seeing a massage therapist there for some time. She recently moved her practice and I saw someone else had taken her place at the studio. I made an appointment and off I went for an assessment and "massage."

I was surprised to find a very new practice to me. James, is in fact a massage therapist, but he is also an Athletic Therapist who is also currently learning Osteopathy as well. After our assessment he felt I could most benefit from Athletic Therapy at that time. I must admit, at first I was a little disappointed. I was expecting soft music aroma therapy and a relaxing massage.....now I was having a treatment!

I need not have been disappointed. The therapy I experienced, having spent years in physio, was nothing like I expected. It is a gentle treatment done while you are fully clothed and it is very effective.

The reason I was seeing him that day was nerve pain down my arm with pins and needles into my hand. I had awoken two days in a row with no feeling in my right hand. I couldn't raise my arm over my head and my shoulder and neck were hurting nonstop. When I left that day, I wasn't pain free but the nerve pain and numbness were completely gone. It took about four treatments and the issue had settled once again. James uses ultrasound and EMS machine as well.

If you are interested in knowing more about EMS(electric muscle stimulation) and TENS (Transcutaneous electrical nerve stimulation) this is an excellent site to explain the differences and what they are used for.

Generally TENS is to relieve pain and a TENS machine can be purchased easily now, as it has become more mainstream and therefore can be used at home. EMS is more of a rehabilitation tool and mostly used by professionals, but with instruction, can also be used at home. I have both and have been taught to use them at home.

Ultrasound uses sound waves to generate heat in the area being treated. That heat then loosens the muscle tissue making it more pliable for stretching and treatment. It also helps create blood flow and lesson swelling and inflammation. I have found it to be helpful in many cases, including foot, shoulder and knees.

I have since seen him for my arthritic foot and knee. James knows my overall condition and we have dabbled in pain management for my back as well.

The Canadian Athlete Association describes the therapy like this: "Certified Athletic Therapists specialize in treating acute and chronic injuries to muscles, bones, and joints.

Best known for providing immediate on-field emergency care of professional and elite athletes, Athletic Therapists are skilled in returning athletes to competition and maximizing their performance potential as fast as possible after an injury. Those same skills and techniques also make them very effective in treating the injuries sustained by everyday active Canadians, including:
  • Common injuries from falls, daily activities and sports
  • Chronic and recurring conditions, pre-surgery and post-surgery
  • Emergencies at sporting events such as concussion, fractures, and spinal injuries
  • Workplace and motor vehicle accidents
Athletic Therapists rehabilitate injuries using the Sports Medicine Model, resulting in a faster recovery, a decreased chance of further injury, and fewer visits to a healthcare professional.
Certified Athletic Therapists are recognized by the credential CAT(C)."

In a word I describe it as relief, and relief without the usual pain. James has never hurt me during a treatment. When I can, I generally come home, have an epson salts bath and lie down for a short time afterward. I try to incorporate this aftercare into any treatment I have whether it is physio, acupuncture or massage. It seems to increase the effectiveness of the treatment. That is what I find most effective but it is possible to go about your day or even back to work if needed.
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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 29. Sensitivity. 

3/23/2015

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Le Nordik Spa in Chelsea Quebec is a wonderfully relaxing place. It has many saunas and hot tubs, along with cooling stations and relaxation and quiet areas. There are a host of treatments available but my sister and I go for the water therapy. It is a full day of wandering to and from saunas and pools. This time Jerri joined us and it was a fantastic day.

I would be remiss if I didn't mention the difficulty in the accessibility of the place. To be fair, they don't claim to be accessible, there are steps everywhere. Having weighed the pros and cons my sister and I felt the front entrance was probably the biggest challenge. She emailed and asked if there was another entrance explaining that we realized there were stairs inside. Inside the stairs have rails and are not covered with snow and ice. Outside there is a series of flat rocks as stairs, beautiful but dangerous for someone with balance concerns.

We were reassured when we got an email with instructions for a handicap entrance and parking in another area. We arrived and had some difficulty finding this "handicap" entrance, but eventually found it.

There was some effort to park, although there were three spaces, there was a large truck unloading supplies right in that area. To make matters worse there was a car parked in one of the spots, idling, waiting for someone. That someone turned out to be an employee who came running out of the building, and jumped into the car.

Finally parked, we went looking for the entrance we were told about which didn't require outdoor stairs. The only thing we saw was a locked door which read administration. Standing there in the falling snow we decided to knock on that door since we couldn't see anything else. A pleasant young woman opened the door and we explained we were looking for the handicap entrance that we had emailed about. She had no idea what we were talking about. She suggested we take the snow covered two flights of stairs to our right. I asked if we could just walk though the administration entrance. Off she went to find a manager, leaving us standing in the falling snow. We weren't even invited inside to wait. I am using a cane now, so not so invisible with the disability.

Eventually, a manager came back and opened the door, and invited us in. We explained we had emailed ahead and were given an alternative entrance. She allowed us to go through the office hall away and up the indoor stairs.

It was a lovely day from that point on, but it is a hard way to start a day of fun and relaxation. Thankfully, I have learned to let it go once I have been assertive about the need for sensitivity.

I was able to spend an incredible day with my sister and my daughter. What more could I ask for? Sensitivity training for staff would be a good start.
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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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    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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