... and Now for the Good News

Greetings,

The last couple of months have been quite interesting for me in many different ways. I have had some medical appointments which have had some surprisingly positive results, and some changes in my life which were necessary. So I figured that I needed to bring you all up to speed on what's going on.

Medical

On the fibromyalgia (FM) front, not much has changed, but there are no surprises there. I have my good days and I have my not so good days. I have found real pleasure in the good days, and have found things to do during the not so good days which have made them "not so good" rather than bad. I have finally started listening to my body, and doing what it needs... for the most part. I still push things a little hard, but that is just in my nature.

I saw my respiratory specialist earlier in the year and my results came back so positive that she does not want to see me for 12 months. It seems that I aced my breathing tests. I am putting this down to the retreat of my sarcoidosis and also my somewhat increased activity levels in the preceding months. Nothing like forcing your body to do things to make your body work and adapt. The bushfires of late have not helped things, nor did my short stint with a chest infection, but they are merely lumps in the road in comparison.

I went and saw my hepatologist as well, my liver function tests have been "off" for ages, mostly due to sarcoidosis in my liver, but also due to some of my medications. So off for a liver biopsy I went. This was an uncomfortable experience I can tell you, but necessary. It made my FM flare up for about a month afterward, but turned out to be worth it in the end. The results came back... no sarcoidosis present in the liver. I am now on a "maintenance" dose of methotrexate to keep things going, and to prevent the sarcoidosis from returning. The hepatologist is also my gastroenterologist. I have been having a little issue with my bowels... off for another test. Still waiting for that one, not a huge thing, just another annoyance.

Today I saw my endocrinologist for the results of my Body Mass Density (BMD) scan to see how my osteoporosis is going, and also to check on my cortisol levels. Well, the cortisol levels are still on the low side so I will be off to see him again in six months, no change there. On the other hand, I can pretty much write off osteoporosis as a current diagnosis, my bones are in full recovery. A very positive result there.

Life Stuff

On the 19th - 20th October I participated in the Brisbane 2019 Relay for Life for the Cancer Council of Queensland which is designed to raise money and awareness about cancer. Most of the teams walked or jogged around a school oval for 17 hours. My team, Brisbane HEMA Teams Unite fenced for the full amount of time. It was a really fulfilling experience. The event raised over $62,000 which will go to cancer research and assisting cancer patients. This was a real test for my FM having to stay up all night and also participating in the activities, but I made it all the way to the end.

About six years ago I started the School of Historical Defense Arts (SHDA) and it has been going along ever since. There had been some administrative issues within the SHDA which were beginning to affect my mental health so I removed myself from administrative matters earlier on in the year, so I could focus on training the students and elements of the curriculum. These are the things that I am good at and have had the most experience with. Things had not improved, and I noted other areas I was uncomfortable with, so as of month ago I retired from the SHDA as Head of School. I have since been performing individual training. This was not an easy decision but one that I had to make for my own mental health.

In June I was elevated in the Society for Creative Anachronisms (SCA) to the Order of the Laurel for fencing research and interpretation. When I was asked, it was a bit of a shock to me. This is the highest award in the SCA for Arts and Sciences. The elevation ceremony went well. I have found that if you find something that you are passionate about and you just do it for the love of it, things will work out well for you. I truly never was interested in awards, I was always interested in the things which I was passionate about, and that others were to. Seek what you love and do it because you love it, and for no other reason.

It has been an interesting time of the past six months or so. I have been writing still, my blogs, and also various projects. I am coming to the end of one so I will have another book published next year sometime. Hopefully, there may even be a second book self-published, which I have been working on for the past couple of years. Things have been busy, the year has gone like a whirlwind, there have been a lot of positives and some negatives along the way. I think that is about it... I have probably forgotten something, but that will do for now.

Cheers,

Henry.

The List: I am here.

Greetings,

So people often ask me how I am doing and what's going on with my health. I usually give the short answer that "I am fine." or that "I am doing OK." For the most part, at that point in time when they ask it is mostly the truth. I don't usually tell all of the truth because it would take too long and would feel too much like complaining in my books and I just don't like doing that. I tell people for empathy not sympathy, I tell people for explanation of what's going on and not much more.

Just for a change I figure I will give some detail as to what's going on with me and give "the list" of various bits and pieces which are going on with me at the moment, and I would not be surprised if I have missed some in the process of making this list. What will be noted is that some of these issues are a daily issue for me and some of them are just irritations which emerge to annoy me every now and then.

1. Fibromyalgia (FM)
No surprises here. I would not be writing this blog if it was not for this condition. It is the one which causes the most issues most of the time. All of the issues impact upon this one and this one impacts upon all of the others. If it relates to pain it can be related back to FM either making it worse or better, usually worse.

2. Sarcoidosis
Update: As of late 2019 this is gone. No presence of it found in my liver as of last scan. Lungs seem to be relatively clear as well.

3. Osteoporosis
Update: As of late 2019 this is gone. The last Body Mass Density Scan said everything is back to normal.

4. Adrenal Suppression
Our good friend prednisone also caused adrenal suppression meaning that my adrenal glands are a little slow to respond to infections. The other symptoms of this one are tiredness, abdominal pain, low blood sugar and other irritations.

5. Coccydynia
"Tailbone" pain. Seems that somewhere in my exciting childhood I did some damage to my coccyx. The result is that I have issues with sitting for an extended period of time, and also rising from a seated position. There are lots of nerves which are connected to this area.

Update: after waiting on the public health system for a period of time, I finally got a coccygectomy, i.e. they removed the offending broken tailbone on 8 September 2022. I am gradually improving, some of the tailbone pain remains, but nerves are finickity things in their healing process. I am optimistic that I will eventually be able to wipe this one out as well.

6. Neck (c5-c7)
This one is a real issue as I get numbness in my fingers on both sides, though for some reason my left is definitely worse than my right. The pressure here seems to be sitting on a nerve connected to my elbow, which is not helpful, though the scans say that it should be affecting my right not my left. Probably the FM screwing things up again.

7. Gastro Oesophageal reflux disease (GORD) and Irritable Bowel Syndrome (IBS)
Lots of fun with eating and digesting of foods. I have been on various different diets to attempt to improve the situation with these two, they help mildly but not so much as how much I enjoy eating what I like. The IBS is also very much connected to FM as well which is not very helpful. The GORD is also related to stress, and with this list there is no surprise that I have a little issue with stress. Not to mention that FM causes issues with swallowing.

8. OSA (Obstructive Sleep Apnoea) and CSA (Central Sleep Apnoea)
Most people will be familiar with OSA where the soft palate of the mouth obstructs the breathing passage causing the person to stop breathing, and also causing snoring. CSA is a little more interesting, in this case the lungs just decide that they are not going to work and just simply stop working. The normal CPAP machine will not help with CSA, thus I have a special machine to deal with it which has variable pressure.

9. Plantar Facitis
Seems that I have been walking too much. So now I have special inner-soles for my shoes to stop my feet hurting so much because I won't stop walking. Besides it is my main mode of transport.

10. Peripheral Neuropathy
Another reason for my feet to hurt, I have almost no doubt that this has been caused by the FM indirectly or by my Neck or some other similar nerve-effect. In any case the feet are irritatingly sore and usually for no reason.

11. Migraine
These are finally under control thanks to various medications. I am very diligent in taking the medications which control these because I sure know when I don't.

12. Bone spur in Achilles' tendons
Picked up on an ultrasound when looking for something else, these only really cause me an issue when I have been on my feet for ages. Or when I have been doing lots.

13. Marfans Syndrome
This has given me some physical symptoms, mainly I have hyper-mobility through my joints, which is no help with the FM, and I seem to be still growing. Luckily I do not have any of the heart issues which seem to go along with this condition. The real issue is that I suspect that this diagnosis covered many of my FM symptoms when I was seeking a diagnosis.

14. Arthritis in thoracic spine
I have a little arthritis in my thoracic spine, my lumbar spine is in great condition. This has been causing some chest pains of late which is really annoying.

15. Asthma
The asthma has more or less disappeared. The only time that it ever appears is if I get a chest infection. Once that is cleared the asthma disappears with it so this is really a non-issue. I have not used a puffer in years.

16. Depression
With no great surprise I have some depression. This stems mainly from the chronic pain which I suffer from, but also other issues which are mainly to do with the various conditions which are listed above. It is usually the complications as a result of the conditions which cause the depression. I am not one to complain so I put on a happy face and go on with my life. I am not the sort of person to go into a hole and wallow in my pain and unhappiness of my lot.

The question must be asked as to why I have published this list of issues and mentioned how they affect me. I have done this because people have struggles which we do not know about. Most of the time they are hidden from the world because it is "not the done thing" to present them to the world because the individual seems like they are complaining.

The "R U OK?" Day is one day out of 365 where the question is asked and it is almost a rhetorical question because while people are somewhat encouraged to tell what's going on there is no more. I publish this list to say that "No, I am not OK." and I am fine with this. I have my struggles and I will continue to fight them. I have days where I find things incredibly hard. I have days where I wonder if it would not be just easier for me to just stop... everything. The thing is that I know that there are people out there who support me and who will help me through my trials and tribulations.

I will stand with all of those who are not OK. I will stand with those who are finding it hard. I will stand with all of those who are tested every day of their lives. I will stand with them and say that: I understand that it is hard, I know that you have your good days and your bad. Learn from the bad days; live for and remember the good days. To those who I call family and friends, know that I am here.

Cheers,

Henry.

Coming Back... from the Semi-Dead

Greetings,

I have been feeling like garbage of late, and every time I go and see a doctor, they seem to have either "situation not changed" or bad news to tell me. Needless to say I have been going through a bit of a bout of depression and it has been affecting things, well, a lot really. I had been finding convenient excuses not to do things, or putting things off, or just not doing things at all. So I had been coasting, doing only what I really needed to survive. In my books this is being semi-dead.

Yesterday I got back on the treadmill after an absence from it for about five months. So I decided a casual stroll would do the trick to warm things up again. So I did 20 minutes at 4.5 kph, this results in 1.49 kilometers or thereabouts. Sorry about the metric measurements, its what I mostly use. This is about where I like to start with the exercise thing. That was it.

The plan is that any night that I am at home, 6pm will roll around and my alarm on my phone will go off and I will go and get on the treadmill again. This is to get some of my long-lost endurance back again and also some fitness in my legs as well. Needless to say, as I progress the time and speed will increase, more than likely it will be the speed that increases first.

Sounds simple right, yes, it is. That is the point. You have to start simple and then work up to things. At some point in time I am hoping to advance things to a stage where I can even do the treadmill on nights when I have training and not have the threat of being too stuffed to teach of train. More to the point I started, and that is the bigger thing.

I had not started because sometime in the next year I am going to get my knee operated on which is going to put me out for some weeks at least. Next there was a threat that I might have a brain tumour, turned out to be a false alarm, YAY! My neck is still a mess so off to a neurosurgeon I go to see what can happen about that, or at least a referral will get written and I will go on a waiting list. You get the idea, things just kept piling up higher and higher (this is just the short version by the way).

Only way out of this one was to stand up and decide it was not going to run it all for me. Yes, I will end up off my feet for a while, but until then I can get back doing things and the fitness will help my recovery. Sure my neck is going to be irritating, but there are ways for coping with that. It was simply time I got off my butt and did something that I could do about it all, not wait until some medical professional said I could. There will be more training ahead for me, and more fencing too, because I can do it.

So, what can you do?

Cheers,

Henry.

Bitten Again

Greetings,

So, I mentioned something a while ago about my knee giving me troubles. Well, I have had an x-ray and ultrasound just for them to find out that it is a perfectly good looking knee which is there. This means of course it that my fibromyalgia has decided that it was high time to come up and bite me in the butt again. I thought that I had this all under control, not to be by the looks of things.

So, this will make my trip to the orthopedic surgeon most interesting, but at least I will know for sure what is going on with the knee, whenever they get around to it. Likewise the trip to physiotherapy is going to be interesting, but at least I should get around to seeing them. Needless to say I am on a waiting list for the both of them.

So, what's the story? The knee is alright in the morning, and gets worse during the day. It also gets worse when it gets cold. Yup, FM all over. Obviously if I use it too much there is an issue, and just to confuse things, if I don't use it enough there are issues. No winning with this one. So, I have been saddled with a knee brace to assist the knee and it is working alright. Similarly I have also been saddled with a walking stick for when I need it.

Looks like I have a trying time ahead, but it is just another bit to get through, like the rest of it. I am figuring that I can work around some stuff and just leave some alone for a while. But be stuffed if I am simply going to put myself in a corner and complain and do nothing. I have stuff to do which needs to get done, and stuff to do that I want to do. Onward and upward I suppose.

Cheers,

Henry.

How was I diagnosed?

Greetings,

Now that FM has been discussed as to what it exactly is, it is now time to start examining it from my own personal point of view. I think that the best place to start is about how I was diagnosed. This is a topic which will go into a little of my own medical history in order to properly explain the situation. It will also describe some of the issues that I have had due to a misunderstanding of this particular condition and things associated with this.

I have a rather long history of joint issues. I have always been rather tall and also underweight. This has more or less caused some of the other issues which have been associated with my condition. When I was in my early teens, my shoulder started to be sore, what would eventually happen was that I was diagnosed with shingles. It has a short on-set time and is quite painful. It attacks the nerves and causes pain whenever the affected joints are moved. This spread down my left arm to my hand. After a couple of weeks it cleared up with the help of medication.

I have been passed from specialist to specialist to deal with various issues that I had. One did an examination of my joint issues that I had been having. I was put through a series of tests to find out that I had some of the elements of Marfans Syndrome. This can be serious, but in my case it was used as more of an explanation for other things. This condition affects the connective tissues. Most of the people who grow to above average height actually have this condition, and excessive growth is one of the effects of the condition. There was also some discussion about my growing pains, essentially low level pain in my joints associated with growing.

The first real joint issue that I was diagnosed with was Patella Melanasia. This is a roughening of the back of the knee-cap which can cause some pain. I had always been an active sort of person and played sport during both the summer and winter seasons. I also rode my bike quite a lot and this was actually the result of doing all of these things all combined together. The issues that I have described give a background to the various issues that I have had with my joints and goes to explain some of the reasons why it would take so long for me to actually be diagnosed with Fibromyalgia.

In 1995, I was participating in a TAFE course which revolved around doing office work. While I was typing one day I noticed that I was getting pain through my wrists and fingers. I thought it was just because I had over-worked myself on that particular day. I rested my hands over the weekend and came back on Monday. The issue did not go away and I once again started to get pains through my hands and wrists. I went to my doctor at the time and explained the issues that I was having. He examined my hands and wrists. There was no obvious swelling in them at all. He put it down to being Carpal Tunnel Syndrome. He gave me some anti-inflammatories to take to see if that would solve the problem.

The anti-inflammatories did not help and actually made things worse as I they caused an allergic reaction and stomach pains associated with them. We tried various different anti-inflammatories over the next couple of weeks to find that none of them would help the problem and all had the same side-effect. The next on the list was cortisone injections, these actually worked for a little while and gave some improvement, but the level of relief was not sufficient to be a solution. I would actually have one day of pain from the injection itself, one day of relief and then the pain would come back. Not an adequate solution by any stand-point. I had to drop out of TAFE due to the amount of sick-days that I was having also.

I was tested for Ross River Fever, this came back negative. This meant that the two prime causes of this sort of issue were knocked off the list. I was also tested for Glandular Fever, this also came back negative. I was sent along to the physiotherapy department at the local hospital to see if they could find anything to help me. Some of it helped, but not for any extended period of time. The avenues were being closed off fast and it was becoming quite a concern for me.

My mother arranged for me to have an appointment with a specialist in Brisbane. My doctor wrote the referral so this could happen. I was hoping that some answers may be found through this appointment. I turned up at the appropriate time and saw the specialist. We had a long talk about what was going on and the things that we had tried. I was then put through a series of tests which would eliminate various things. The results would all come up either inconclusive or negative. What would come out of this appointment was for the specialist to say that it was not all in my head and there was something that was wrong. The problem with this was that he had no diagnosis for me, so I was back in the same place, more or less. At least I knew that there was something wrong and it wasn't all in my head.

In 1996, I was enroled to go to the University of Southern Queensland. With no answers and various issues with my health cropping up and being annoying. I decided to change to one of the doctors at the university medical centre. I had also noticed at this point in time that I was feeling tired a lot. I put this down to various other factors. I had a discussion with the Disability Support Officer about my condition and she said that there was some things that she could do to help, I was relieved at that. My workload was reduced and my lecturers and tutors were informed about my condition.

I had a few appointments with the doctor at the University and she put me on anti-depressants in order to assist with my health. We also tried a couple of different painkilers to help with the pain. The painkillers simply did not work and I started to get an adverse reaction to the anti-depressants. They started to change my personality quite a bit. This was not for the positive I can tell you. Eventually it was noticed that things were just not going according to what they should. I eventually got off the anti-depressants and went back to my original doctor. In 2000, he made an appointment for me to see a Rheumatologist at the hospital. I was not particularly optimistic at that point in time.

I turned up to the appointment expecting to be churned through and told exactly the same thing I had last time I went to see a specialist. He had a look at my referral, had a chat with me and did a basic examination. He then ordered what I can only describe as a battery of tests. For the next week I was turning up to get X-rays, blood tests, and scans of every type. The one I remember most was the bone scan. They inject you with a dose of barium in order to dye the bones and then ask you to come back in a couple of hours. Conveniently I had a friend around the corner so I spent some time with her. By the time the couple of hours were up I was feeling really tired. I had the scan and they sent me home. I began to walk but began to feel really tired so went back to my friend's place. I slept there for about six hours before getting a lift home.

The stack of results arrived back at the specialist in time for me to have my appointment. I was expecting to get no answers whatsoever. The first part was right, all of the tests came back negative. I was told this and immediately felt worse. Then the doctor turned around and asked me some more questions, and had a think. About five minutes later he said he had a diagnosis and it was fibromyalgia. Well, finally I had a name for this problem. Things were looking up. He prescribed me amitrypiline for the pain and also because it was an anti-depressant. He also gave me a little documentation about the illness.

I went home and had my first pill. About an hour later I was feeling really tired so went to bed. I would not get up again until three days later. I slept like I had never slept before. After sleeping I got up again and my flatmate said I looked like a zombie. There was no pain and this was good, but I could not stay focussed. I tried this medication for the next couple of weeks with the same result everytime I took it. This was not particularly healthy for my university course so I decided to stop taking them. I moved to Brisbane once my university course had ended and I graduated.

In 2001, I started having issues again so went and saw a doctor at Toowong. He wrote me a medical certificate for the University as I had started Honours. The same symptoms came back so he sat down with me and said I had a choice to make, either continue on with my current path or actually sit down and start working on it. I took the second option, we tried a bunch of medications and finally found some that actually worked for me. This became an effective medication regime and one that I would mostly stick with until now, except for a couple of minor changes. The result of this was that the symptoms finally began to stablilise and I learnt how to live with the condition.

Over the past years, there have been good days for me and also some really shocking ones as well. I was eventually put on a Disability Support Pension once the symptoms had stabilised. All in all I have had a victory and am now able to do much more than I could before. I still have my exceptionally good days and also my days where getting out of bed sounds like a bad option. The important thing is that I now have doctor who is willing to go out of his way to help me and this has been a great help. The end of the story is that with the diagnosis and the right doctor I am now able to do a lot more than I could before. Yes, I do still get my bad days, but I can now deal with them better as I know what is going on and that things will get better again.

Cheers,

Henry.

What is Fibromyalgia?

Greetings,

The first question that really needs to be answered in this particular discussion is "What is Fibromyalgia?" Now, there are a lot of definitions to look at and information can be found all over the place. In order to make this rather long process a little less painful, I will be using both some information from various hand-outs I was given and also some of my own personal experiences. Hopefully this will mean that a decent sort of description of this particular illness will result from the combination of these two.

Ok, where to start. Needless to say, I have a lot of information about this particular subject. My mother was most helpful once I was diagnosed with fibromyalgia (FM) and gave me a large envelope filled with hand-outs about this particular issue. It has been most useful for me. Where to start?

"FM is a "Chronic invisible illnesses". It isn't just a form of muscular rheumatism. It's actually a type of neurotransmitter dysfunction." (Dr D. Starlanyl, "A Guide for Relatives and Companions)

Well what does this all mean? What it means is that FM is not just a form of rheumatoid arthritis it actually has a great deal to do with what is going on in the brain. Neurotransmitters are what the brain uses to communicate with the rest of the body and tell it what to do. In the FM patient it means that something has gone wrong here and it is telling the body the wrong things. This causes all sorts of issues in the body. It has also be described as such;

"Fibromyalgia is a common condition characterized by diffuse musculoskeletal pain and fatigue. The syndrome is defined by the presence of musculoskeletal tender points on physical examination. Additionally, persons with this syndrome have a high incidence of headaches, ocular and vestibular complaints, parasthesias, esophageal dysmotility, "allergic" symptoms, Irritable Bowel Syndrome, genitourinary symptoms and affective disorders." (Dr D. Clauw, "Fibromyalgia: More Than Just a Musculoskeletal Disease)

More medical talk for those of you who understand all of this, that is great. To put it in more layman's terms, I have come up with a definition of my own. Take all of the fatigue associated with Chronic Fatigue Syndrome and combine it with the joint issues of Rheumatoid Arthritis, and then throw in some other issues as well and you will have a general idea about what FM is. The problem with the "other issues" that I have described is that these can be attributed to a lot of other issues, and this can be one of the most annoying factors in this particular illness.

In essence FM from my point of view is a combination of all sorts of different symptoms which happen to be present in the individual and generally make their life a great more difficult than it could be. For doctors who are unfamiliar with this particular condition it can cause all sorts of problems as diagnosis for it can be problematic to say the least. Often people with undiagnosed FM are sent off to psychologists and psychiatrists as the pain and fatigue has a random on-set and effect and it is assumed that it is all in the patient's mind. Admittedly, there are elements of FM which affect mood and so forth, but it is also a physical condition. With regard to this, it is not particularly common as it only affects between 2 - 6% of the population including children.

There is a long list of symptoms which are associated with FM and not all of the people with this illness actually get all of them. This list includes some broad categories and also some specific symptoms which are associated with FM when found in combination with other ones. This long list of symptoms, which can overlap with other conditions, and often do, makes diagnosis particularly difficult. In my case, I suffer from the following symptoms:

Fatigue,

Cognitive function problems including: calculation difficulties, memory disturbances frequently saying the wrong word,

Psychological Problems including: depression, anxiety,

Other Nervous System Problems including: sleep disturbance, headaches, changes in visual acuity, numbness or tingling feelings, burning sensations, lightheadedness, feeling "spaced out", intolerance of bright lights, enhancement of medical effects, ringing in the ears

Recurrent sore throat

Severe nasal and other allergies

Muscle and joint aches

Mottled skin appearance

Muscle spasms

Chest pain

Dry eyes and mouth

Cold hands and feet

On top of my list there is more than a dozen other symptoms which can be associated with FM. As can be seen by the breadth of my list of symptoms, the diagnosis of this condition is of a particular problem. For many years this particular condition was not recognised by the medical profession, and in some cases is still controversial. For governments, recognition of this particular condition is also problematic and many assistance agencies do not recognise it as a credible disability due to its random nature.

The purpose of this particular blog has been to discuss FM as a condition and attempt to give some sort of idea about what it is. One of the biggest problems with this particular task is that the symptoms are so widespread and differing that only really an approximation of what it is, is possible. I can honestly say that until I was diagnosed with FM I had never heard of the condition. A great deal of information is available about FM from many sources and needless to say the Internet has a fair amount the Wikipedia has its own page devoted to FM (http://en.wikipedia.org/wiki/Fibromyalgia). Some of the problems associated with the diagnosis of FM and also some of the opinions about this condition will be discussed in following blogs. Hopefully this blog has given some useful information about this particular condition for the readers, and also more of an understanding about it.

Cheers,

Henry.