Archive for the ‘RSI’ Category

Getting Diagnosed

Its been a long time since I updated this blog. Having given up totally with ever getting any sort of answer from my GP I thought what’s the point of continuing complaining to my doctor who must had thought I was making it up.

It was roughly 18 months ago I went to see the GP with abdominal pains under the lower left ribs and it was found my liver was inflamed probably due to taking pain management drugs for years. Only a small dosage but almost every day to deal with the discomfort from the repetitive strain injury. At that time I thought my GP was being quite good as I had blood tests and scans, all shown nothing and then his interest quickly diminished despite the other numerous symptoms I was developing such as eye problems, dry inflamed skin, digestive issues, headaches and suddenly becoming lactose intolerant over 30 years of being a milk addict. I saw all three doctors in the practise who weren’t interested and insisted I had all the blood tests available to them. Later I found out this wasn’t true and their medical incompetence means I wasn’t diagnosed for another year.

Earlier this year I filled in an online form to move to another practice. Firstly I did it in a daze not realising that just filling in the form online would move me. Anyway I am glad I was moved as the new doctor on the very first visit took note of my symptoms and ordered an array of blood tests including ones not done by the previous doctor; vitamin D and complete Hormone panel. This shown some very wild numbers (low T numbers & widely high others)  and I was quickly referred to a local Encrinology clinic where I was given more blood tests and most importantly a bone density scan; a DEXA scan. The bone scan came back showing my T levels where low in the bones too and it shown I was actually suffering from osteoporosis rather than repetitive strain injury caused by a genetic syndrome that I was born with. If left untreated it develops into things like osteoporosis and worse since my body wasn’t producing enough testosterone.

What annoys me is that my original doctor had 20 years to diagnose me with what consultants have stated as “marked” symptoms – an other words bloody obvious ones and its not even that rare, something like 1:1000 suffer from the same genetic condition itself. Yet with 3 months of being with the new practise I had a clear diagnosis and started treatment. Treatment that just involves taking testosterone every day. Hardly hi-tech! This won’t cure the existing damage but will slow down its progression quite a bit. If I had diagnosed sooner then I wouldn’t have osteoporosis now.

My previous GP at best I think of as incompetent and at worse should be struck off. They were the sort of doctors that were more interested in doing charity work and going on holidays 6 times a year at the tax payers expense rather than treating their patients properly. The government are constantly going after those that are disabled or sick, where as rogue doctors that extract more from the public purse just get away with poor diagnostic results and a pat on the back. I would love to say bad doctors are a rarity but I just have any evidence to support that statement. What this does prove though is changing doctors is the best thing to do if you can’t get any answers. I wish I did so years ago!

So my advice to anyone. Ask your GP to do a full hormone panel and check for vitamin D, Calcium to exclude bone problems.  The doctor will be reluctant to offer a hormone test as it costs more than standard tests but if you have bone issues then that’s the spread of tests needed to identify the problem.

I do wonder if my original doctors reluctance was inspired by saving money or just plain incompetence. Either way it doesn’t show them in a very good light as so called professional people looking after the health of the local community.


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Hows the RSI?

Its been a while since I gave everyone an update on the old RSI. I am still suffering from various symptoms, I think I always will have that background discomfort.

I have though improved enough to get myself a Samsung netbook which I find more comfortable to type upon than my desktop keyboard for blogging and writing on generally for short periods.  I wouldn’t use a net or laptop as a replacement for a desktop as I do think that they should not be used for extended periods of time ~ in fact it actually says that in the Samsung instructions somewhere I believe!

I do take regular exercise; including using weights, walking and activities like gardening. I am even thinking about growing my own fresh food as I’m sick of the cheap rubbish in the supermarkets lately. The trouble is the soil isn’t very good and it would mean some new top soil and lots of horse shit.

I still do get the hand numbness, pains in the neck, shoulders and spine. I still get that referred pain and hazy mind. I am still very forgetful to the extreme and to be honest it can be so bad where I can forget where I am for a while. That is a bit odd and it stresses me out when I’m on my own. I have SatNav for the car and I rely on other people for other times.

I am still taking the same amounts of breaks and sticking to my 30 hours per week with dedication. I am tempted to do more, but I know I physically cannot or I could but I would be unable to do anything for 2 or 3 weeks afterwards. So, remaining disciplined to a routine is really important for my recovery.

Motivation is something that is hard to maintain with a long term injury like RSI. There are many backwards steps that you have to take in order to move forward. Sometimes you are taking 3 steps back to take one forward, which is disappointing and it can be quite depressing. If you can accept this is the nature of the beast then I find it helps. It still upsets me, but I won’t dwell on it. Think of it like riding a bike, when you fall off you get back on and try again. Yeah, you may cry like a baby for a while but you still get back on and try again.

I think positive mental attitude is important and you have to learn to block or not to be concerned about those around that are being negative, but at the same time try to help by turning their negatives into positive. Just don’t let them turn your positives into negatives! It can easily happen, if you let it.

I still cant and won’t use a normal mouse. I use a track pad on the netbook and/or a vertical usb mouse on here and my desktop. I do use my netbook with a good posture not too dis-similar to when I am using the desktop.  Also, sometimes I do plug a big screen into it and use that rather than the tiny 10inch one. But for writing on the go, simple editing of pictures and other light duties its a very good solution. Well so far so good!

Anyway, I must stop now as the numbness is starting to return which means its time to something completely different for 10 minutes.

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Dodgy Brain

This week I’ve been in a little better head space, up until about Friday when I started to have significant problems with my short term memory again. This is probably fatigue again. Its the end of the week and I am always a zombie. As I previously mentioned I do find it difficult to concentrate and it like the mind is in a haze.

I do have to force myself to do things, but I do exercise regularly even though it is incredibly hard and sometimes painful to do. I use dumb bell 3 or 4 times a week, I walk allot (see walking pictures) and I do more around the home too. Having a permanent state of exhaustion does mean I make a lot of mistakes, despite triple checking everything. Then when I’m sure I did something right, I doubt myself because I cant remember exactly what I did a mere 30 minutes ago.

When I’m out walking I don’t go alone, but with another family member who really gotten me into it in the first place. Because of my short term memory issues If I went on my own, I’ll “forget” where I am in relation to where I parked the car. I’m not joking.. And then I have a brain freeze moment.

Other things I have noticed when I do get lost in the car and ask for directions I can only often only remember 2 items the person said. Anything beyond that, I have to ask another person closer the destination. I am only in my mid 30’s, not in my 80s and I know this should not be happening.

All of this is probably long term fatigue (most likely) or it could be something more serious that my GP is too lazy and up himself to diagnose. I do have a very low opinion of the NHS in this country. They waste money on mid-management, ever changing computer systems and administration which does nothing for the patient. In fact all it does is divert resources away from front line services, into the pockets of contractors.

I do eat fairly well, all healthy food and some treats too. I have also noticed increased problems with my eye sight, but only a very slight decrease in clarity where I have to wear my glasses more inside rather than just when I’m outside doing things. Other than that, I’m fairly healthy! lol

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RSI 2009

I have still not recovered from RSI, I get numerous flare-ups at completely random intervals. I sometimes think what else have I got to do. I steadily modify my own treatments, increasing and decreasing supplements, exercises of differing types and sleep patterns. Still, when it comes down to it I can’t say that I am cured, that I am like a person without repetitive strain.

I work hard with dumb bells and am lifting 10kg with extreme difficulty but I am doing it. Its painful, I feel weak and its something I have to force myself to do. I often feel like a person with zero energy and little motivation. That’s not because I am depressed, its a sort of lethargy and the feeling of just being permanently tired.

Sometimes I stand up to type because sitting down and standing back up again is just not worth the pain. Still, despite the flair ups, the constant pain, lack of quality sleep, numbness and other various symptoms, there’s no help from my doctor or the NHS as a whole. Instead, the nation suffers because of their incompetence and employers total disregard for the welfare of their staff.

Instead I struggle every day and fight to just have a clear enough mind to think straight. My memory is still absolutely appalling and despite checking things numerous times, I make the odd small error. When strangers pick up on it, I find it embarrassing and really confusing that despite all my checks I still managed to do it wrong.

In a way I feel like I’m twice the age I am. My body could be that of a 70 year old and my fuzziness and days of cloudy thinking could be easily confused as something that is suffering from early stages of dementia. Still, the GP and NHS can offer nothing for treatment or diagnostic assistance. I am left to do it myself, to try things and be a guinea pig. I’m left without any help what so ever and if I wasn’t for those that I live with, I would be totally screwed on those days I can’t even pick up a kettle on water.

I struggle with what I do sometimes, being self employed and writing for a living is really difficult in this recession. I am an affiliate marketer, but this involves so much typing and restricting it to 30 hours a week means I make a poultry income. Its really difficult to keeping my writing time to 30 hours, as historically speaking I would do double that just to make a below average wage.

At the moment I am going through a period of discomfort and my head is all over the place. What do I try next, what is left? I don’t know any more.

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RSI Update

I have to say that I do still suffer from repetitive strain type symptoms though its not an every day occurrence. I’m still doing daily exercises, taking my supplements and resting more. I have to rigidly stick to not using the computer more than 30 hours per week, which in some way has been good for me. It certainly makes you waste less time and concentrate the mind in being more productive.

I do still suffer from numb hands, pains and weakness in the arms. Strength has improved though some to my surprise last week I was able to lift half a kettle of water with only minimal discomfort. It was a really great feeling to be able to do just that.

I think the majority of my problem appear to come from the area of the spine between the shoulder blades. I believe its related to allowing my shoulders to roll forward which over a longer period of time is putting excess tension and pain. I do think that because that area is inflamed that this might be pinching on some nerves causing the numbness. In fact I am going to have to stop typing now because of it… I’m sorry to say, there’s no such thing as being cured.. you only can hope to learn to manage it and avoid discomfort.

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Recovery Lessons

I think one of the most difficult lessons to learn during recovery is to pace yourself. Sometimes you feel like you are getting REALLY better and almost feeling normal again, and so then you slip back into old routines and those bad habits that injured you in the first place – This happens to me quite abit!

So instead of sticking to my usual routine of using my weights every other day, I let it slip slightly and type more than I should because I feel like I am getting back to normal, the trouble is when you let the activities slip that are counter-balancing those repetitive ones then you just take a few steps backwards.

So yes I’ve taken a few steps backwards and have weak arms again because I failed to stick to my workout routine. I suppose the moral of the story is to not to get too over confident and push yourself too hard. Even if you feel better, stick to the same routines rather than returning to those old ways.

I will take 2-4 weeks to get back to the point of where I was last Thursday. I recognise the reasons why and will over come it. Its better to be positive rather than too down. Set backs can so easily make you down beat, but thats another battle you have to fight with yourself and win.

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I had a comment on a post the other day asking me how long I’ve had RSI. That made me think as since I’ve never had it formally confirmed because I my GP is more interested in trying out visualisation exercises rather than referring me to the most usful place;  Rheumatology would be a start! I got to give him credit he did refer me to carpel tunnel surgeon despite it not being carpel tunnel and then that surgeon referred me to a physiotherapist who couldn’t refer me to Rheumatology but she recommended it in her report, which the GP duly ignored.

The reason I decided I no longer want to take any further advise from doctors is that I wasn’t getting any where and then my GP prescribed a concoction of drugs that caused an internal bleed and it led to a cancer scare. I had a blood test around that time and it set off a few alarms in terms of a high white cell count. It doesn’t have to mean cancer I since learnt, its often an indicator of bleeding, infection or inflammation. So, why did the crappy GP scare me half to death by sending me to a cancer clinic? Is it because he’s a moron? Yes it is!

Anyway, I am digressing again.  There were times I had the symptoms of mild repetitive strain when I didn’t know what it was. If I include those times, Its roughly 10-12 years from when it started and to date, though it may be more.

In the early days I didn’t ever talk about the pain and was in denial for much of the time. People saw people with ‘RSI’ as if they were making it up or they were lazy. My own employer at the time wasn’t very supportive at all and the constant pain was very much affecting me mentally.

Around the same time a special member of  family died of  CJD which is a nasty and very distressing disease. I went to a her funeral and a couple of weeks later her husband died (often happens for couples).  I had to take holiday from work because my employer didn’t believe that I was going to a second funeral. I thought later, perhaps they would had liked to see the bodies as proof?  They were a despicable employer and with a completely inhuman attitude towards HR. I will never forgive them for their heartless behaviour in a time of distress for us all.

I think development of RSI at the time was partly due to stress, lack of sleep and over work obviously.  I left this employer about a year afterwards and I was glad to rid of them. Upon leaving, stress went down but by then the physical damage was already done.

Since my GP at the time thought it was nothing but sore arms related to computer work then I ignored it and carried on. All the time greater damage was being done. Eventually after years of abuse, it got so bad that I could only type for 10 minutes without feeling pain. Not long after that I think I started to take an interest in the subject myself.

Firstly, I must admit I took a very evidence based approach which frankly was a bit of a waste of time as really the things that tend to work are things that may not be totally proven to science and yet they still give some benefits. I think you need an open mind when trying to find a solution, rather than automatically closing yourself to new possibilities. And for that I want to apologise to Sarah for thinking initially you were a bit crazy with those ideas that were quite alien to me. You opened my mind to different non-clinical possibilities and so I thank you for that.

I do not diss new idea’s now, I take the best of them and incorporate them into my recovery. Sometimes they don’t work, which is fine and sometimes they do! Its important to just keep trying.. and never give up.

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