Been a Long Time...

Greetings,

I do apologise that it has been so long since I have written anything on this blog. I had not forgotten about it, it is more that I really had not much to say about what's been going on and really nothing to say pertinent about fibromyalgia (FM). Today, I have found things to talk about, so this entry may be a little long to catch up on the past year and five months.

What's Been Happening

Well, as usual, I have been plodding along at my usual pace. I am still fencing, and training regularly. My fencing school is going from strength to strength. I now have two subsidiary schools, one that focuses on Italian longsword and, sword and buckler; the other focuses on Iberian swordsmanship. We now have a membership total of about 60 members total, which still blows me away. Fencing is still my main form of exercise, but as will be noted later on I have added to this.

I have finally gotten in to do something about my degrading knees. I have an appointment to have an arthroscopy done on my left knee, and a referral to get the right knee done hopefully at the same time. This means that I am going to be off my feet for a period of time, but it beats having one done, and wrecking the other, and then vice versa, a vicious cycle. If I get both done at once even weight on both legs. There will be some trying times ahead but I look forward to better health at the end.

My neck has been giving me no end of grief, we have tried physiotherapy on it, and now I am on a waiting list to see an neurosurgeon to see if he can do something about it. There are vertebrae out of place and pressing on nerves, all ugly stuff, and not playing nice with the FM I can tell you. I look forward to getting that all fixed.

Recently... 

Mid-last year I started getting on my treadmill to do some walking at home. I started slow and for a relatively short period of time. This was for some basic cardio-fitness work. I have been gradually increasing the amount of time I have been going for and now I am walking for 30 minutes. I have also been gradually increasing the speed as well and have gotten up to 5.9kph (3.7mph). I have found the best thing for this to keep you going is that it need to be regular and at a time where you know that you can do it. I put my headphones in with music playing to keep me going. I have also found that it is useful to have a goal as well. My goal is to achieve the "legionary step" which is 6.44kph (4mph), but also to maintain this speed for an extended period of time. It is the historian in me that picked the speed. Goals are really important for motivation, and they need to be personal.

There have been some hiccups with my training needless to say, and there are days where I just can't do the walking, but it is important to recognise these too. The important thing is that you also need to recognise the difference between the "physically can't" and the "I'm just being slack, can't". This is the reason why it is important to have goals and motivation to do your exercise. Of course the goals need to be reasonable. I am not aiming to run a marathon, in fact I am not going to be jogging or running at all. Walking is reasonable for me so that is what I am sticking to.

Very recently thanks to a new friend Andrew, I have been going to the local hydrotherapy pool to do some exercises, and work on my joints to ease some of the FM. It is going to be a long-term project, but the results will speak for themselves. I am hoping that I will be able to get my wife to join me later on as I think it would help her too. Merely being in the heated water and being able to relax all of the joints has been an absolute blessing, even if it has been meaning getting up really early in the morning. If you get the chance to go to a hydrotherapy pool, just DO IT. You will not regret it, especially in the cooler months.

Some Notes

Just to polish this entry off I am going to give you some notes and things to think about. These are things that I try to think about all of the time, and especially when I am considering my FM. More so when I am reading about it, or discussing it with others.

1. Don't let people tell you that you can't until you have tried.

2. You don't know what you can do until you have tried.

3. Do things that make you feel good (and don't impinge on others feeling good).

4. Listen more than you talk.

5. All information is useful to a point.

I thought about giving explanations for each one of these, but I think, for the most part, they do not need explanation. If you have any queries about what I mean with regard to these notes, please feel free to ask in the comments below and I will explain what I mean. Fibromyalgia can be a debilitating condition, but only if we allow it to be, we need to stand up and not let it take control. You have the power to do this.

Cheers,

Henry.

If this is your first time reading this blog, I recommend that you go back to the beginning and read my introduction so that you may understand what I am going on about, just follow this link to my first post: https://alifewithfibromyalgia.blogspot.com.au/2009/11/introduction.html

A Victory at Last... Physiotherapy really works.

Greetings,

Yes, you read it right, I have a victory at last. My regular readers would have read about the problems that I have been having with my knees being quite painful for quite some time. They would have also read about the awful threat and actual happening of me having to use my walking cane for a period of time. Well, I can finally report a victory on that front.

Some months ago, March by my accounting, I managed to get into see the Allied Health Department at the Mater Hospital in Brisbane for an assessment on my knees. After the assessment they decided that they would trial me on three months of physiotherapy to see if that would help before going to send me to see the orthopedic surgeon to see what surgical options there were. I liked this idea as the idea of them cutting open my knees was not my idea of fun as it involved weeks of being off my feet.

Off I went to the Physiotherapy Department. Horribly helpful people, obviously not well-informed about all of my conditions. Sure they got told about my fibromyalgia, but not about the hyper-mobility and the marfans syndrome. These can make some of the exercises a little interesting and also some of the stresses on joints a little interesting. Once these were dealt with things got started.

My physiotherapist Anne was great. Rather than going straight for the knees she started with my posture and looked at my feet. Seems my feet were rolling inward resulting in my knees doing a similar thing, more stress on them, so we started there. My feet have mostly been good aside from the occasional dislocated/bruised toe, forming bunions, long feet and long toe issues. First we did some exercises to convince my feet to start "standing up" and rolling out. This also did a bit of work on my ankles as well, not a bad thing. Some taping was involved which worked a treat.

Result, I now have orthotics in my regular walking shoes to keep my feet in the right place. This helped a bit with taking some pressure off my knees. Next bit, as a part of this was gaining some control over the muscles around my ankles and the joints themselves. Also stretches were involved of various muscle groups in the legs. Ask my fencing students, some of them are now being subjected to them.

With the feet and ankles on the mend the knees were next. This is where the real work started. Lots of exercises lots of repetition and lots of posture correction. If you are a fencer, and your teacher says "Get your knee turned out." Just do it. It will save you a lot of time and effort later on. So now I have a bunch of exercises to work on groups of muscles and also stretches to also keep them nice and limber. They were horribly tight previously, I never noticed how much.

The end result of all this is. When you go to the physiotherapist and they give you exercises to do. Do them. They do work. They will help. I was discharged from the Mater Physiotherapy Department today. Aside from the usual fibromyalgia annoyances which I have to put up with anyway my knees have never felt better. I will be keeping up with the exercises and stretches because I do not want them to go back to where they were.

Cheers,

Henry.
  

Winter is Here... Not Happy.

Greetings,

For the first time, I think, I am actually going to write one of these blog posts while in the middle (I hope) of a fibromyalgia flare. Hopefully there will be some useful information in amongst the ranting and raving.

So this one started yesterday with some leg cramps and neck pain. I was decidedly uncomfortable so I spent the day in front of the laptop writing in order to get my mind of things. Had to miss fencing practice because I could not get there and be useful due to the issues. Actually had to go and have a lay down at one stage due to the pain and pure tiredness getting to me.

Second day... Did not sleep well last night, in fact probably would not have at all if it was not for the medications that I am on. The neck woke up all messed up, neck pain from muscle and bone, not to mention radiating down into the shoulders. The temperature was also not helping at all as it has been quite cold the past couple of days. Got a little bit of writing done and then managed to summon the energy and motivation to leave the house, had to "pay day" and all. Off to town with my lovely wife.

In town, got the money, cramped ride on the bus did not help the already irritated knee. All pretty good until I decided to go down a set of stairs, at which point in time I was reminded why I do not have a license. First flight to landing all good. At the landing there was a stumble and an attempted fall down the rest of the stairs. Luckily my wife noticed the stumble and grabbed me resulting in a fall backward instead of forward. Resulting damage: Minimal, bruised ego, knees a little sorer than before. Had a lovely lunch at my favourite sushi restaurant in Brisbane, minus the opinionated little cow who was sitting next to us.

The nerves are simply just not playing ball. Looks like I am going to have to be extra careful at fencing training tonight. I am determined to go and FM be damned if it is going to stop me from going it is what keeps me going and even if I have to grunt and grumble my way through, I am going. The wife is a little concerned about my fall, so I will take things a little easy tonight. Mostly teaching anyway. Hopefully things will improve tomorrow and I will not be back on here adding another post with the continuing saga.

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.

Knees... Why do you not like me?

Greetings,

So, I figured this one was worth the blog, especially because it has some relevance to the overall picture here. Once again, I am going to be writing off the top of my head and not editing it. I have begun to find this most useful, even if the thoughts do get a little jumbled and I do end up a bit off track. I will, however, try and make at least a decent amount of sense.

When I was 15, I was diagnosed with "patela melanasia", also known as "rough knee-caps" undoubtedly a result of over-use and doing too much. Yes, this sort of thing started at least that early if not much earlier in my life. So, the knees have always been a little irritated at times. Now we fast-forward to today....

Still doing too much, add fibromyalgia, a bit of age and you have a pair of knees which are not really happy with me at all. My biggest symptom from fibromyalgia that I get is joint issues. I have joints, they ache or are just plain painful, usually for no good reason whatsoever. For the most part I deal with this myself with exercise and bits of rest here and there, however this is different. So I have taken myself along to my doctor to ask him what I am going to do with myself, etc. So referrals off to the hospital, on waiting lists, blah, blah, blah. I have no idea what the hospital is going to say or do, especially considering I was referred to both Physiotherapy and the Orthaepedic surgeons.

So here I wait. I figure that in the mean time I can keep the doctor up to date with what is going on (situation normal), and see how I can deal with things myself. This is something that I will be discussing with the doctor. What does this all mean? My mobility has reduced quite a bit. I am having more pain in my knees that before. However, I am not quitting fencing, I will find a way around this and lots of other stuff, even if I have to ask for.... help. Something I hate doing. Luckily I get picked up for my school training, now all I have to do is figure out the rest of it. Figure I am going to end up cane shopping a little earlier than I expected.

So, with winter coming on down here in Australia in the next couple of months I can see things getting a little "interesting". I will keep going, I will keep doing stuff, I have no intentions of hiding myself away, though I do think I will have to figure out this "rest" thing, a bit at least. Anyway, I may get around to keeping people up to date with this one, but I do not guarantee a thing.

Cheers,

Henry.