One step forward, two back, one more forward.


I have a real bad head today, the weather is very stormy and hot. Pain is still down about 4-5 but shoulders are stiff and painful.


My son Wayne is here for a few days so that will be good, he has no computer to sort out either this time. I hope the hot weather keeps up.


Woke with very sore eyes, they are very dry used SNOTEARS that made them feel a bit better. I feel dizzy a few minutes after standing up and a sick feeling. My body temperature is going though extreme changes. When changes are this bad it is almost as bad as the pain.


Last weekly B12 injection today then they go to monthly, this one stung like the rest but not for long. I have still got very sore eyes. I went to Pilates I think I am getting better at most of the exercises and I even manage to relax.


I pulled my neck by looking up to a shelf, the pain shot to my head like a knife being thrust in it, also the pain went down my arm temporarily paralysing it.


Physio today Wietse did usual I had 13 needles in total around head, neck and ears the average being 10. Wietse massaged my neck and shoulders as they are very tight it really did hurt he kept stopping to get me to breath. The muscles that are causing the problems and pain are called the TRAPEZIUS muscles.


My neck feels a lot better as not as stiff but it is still painful from massage. Pain levels are up a bit today mainly shoulders, but knees and elbows hurt as well.


5 years today since the fall it is 3.45 am I am in a lot of pain I am just sat here crying wondering why all this has happened to me. Was I so bad in a past life and this is my punishment or am I just bad ? I slept less than normal I just laid there thinking how it used to be. Paul and I went to Mapplethorpe for the day I needed to do something, it was a good day walked too much and paid for it later with a lot of extra pain but was enjoyable and it took my mind off other things.


In town today, the scooter always make my shoulders hurt. I have double vision while reading or watching television not too good when I see two of everything this makes it very difficult to read and look up phone numbers. The TV I am not too bothered about.
I leaned forward in the cupboard and bashed the top of my nose causing it to bleed. Pain levels are up a bit more about 6-7 I think this is because of the hot and stormy weather we are having. All this lovely weather and I am in too much pain to enjoy it, but that's RSD, always out to get me. I had a lay down and felt a bit better.


Not a good nights sleep again, because of the pain took H CODEINE. Physio again Wietse did acue without the electrics. I had a good talk to him he said I did not look too good and need to go to bed every day for hour to rest or I will end up in hospital again. I feel like I have bean thrown from a tall building everything hurts.


My hands are dropping things mostly the right one I think the carpal tunnel is playing up again I have spilt a lot of hot drinks, mostly on my legs. I am still in a lot of pain with the right wrist. Where I bumped my nose is swollen and sore also my eyes are swollen and dark.


Doctors today, he has stopped water tablets, they seamed to have done there job. He will restart them if ankles and legs swell up again. I asked him about double vision he thinks a side affect of tablets or exhaustion, I have had a recent eye test so its not actual eye problems. Bad spasms in my feet and legs in the night and early morning.


A kind lady has given me a magnetic bracelet to try for pain relief to see if it helps, you never know it might I might have hit on a cure if only it was that easy


The pain is going down again back to about a 3-4. So I feel a lot better. I looked after my grandchildren for the afternoon we made pirate hats and coins. They also had a sword fight; I think they had a good time I did.

While its still good weather, I did a bit more gardening. I have bean wearing a wrist support on my right wrist this helps it. I had a lay down, you never know when Wietse is watching. I always feel more tired afterward. I am still not sleeping any better during the night. Paul has gone to Wayne's for a few days to help him do some decorating so its just me Andrew and Sandy.


Last night I took of my blanket guard to see if my foot would stand the weight or go into a pain and spasm session, guess what I went all night with it off no extra pain and just a few spasms. The quilt felt a bit strange, as used to a tunnel affect and cold feet in winter. I still have a lot of pain in right wrist. All my joints ache, I hope I am not getting something.


Again left off guard but this night woke in pain moved foot around a found a better position but did not sleep much. Had a lay down in the afternoon, but feel quite tired as I probably only got about two hours sleep last night..
Pilate's, I have found that I can do the exercise that involve just one movement any more my brain just seems to shut down and I have to stop and restart but I think it will get easier I can only hope.


I have put guard back on my bed as foot is playing up without it. Pain level are still fairly good but I am having pain spikes quite a lot. Physio again, Wietse did normal acue no electrics, he said I locked a lot better than last time. I told him I was going to bed every day for an hour he was pleased with me.

Well that's July gone, I don't know what happened to the very hot weather we were predicted for the whole summer but never mind. I hope every body is enjoying some good weather and alot less pain.

Love Gill.

Five Years 3/3

Continued from 2/3


RSD is not heard of much, so when I tell people what I have got, some are numb struck especially people that have know me a long time. Some people are very strange towards RSD whether its because they are afraid or just don't care I don't know. Some ask me how I am, and then tell me about them selves or other people they know, before I have time to answer.
Friends and relatives who used to come now no longer do, for one reason or another.I get a lot of so called promises of help or relaxation times but they are not always kept and I am let down a lot. Sometimes it feels like my only true friend is Sandy, my dog. A lot of my running friends still keep in touch.
I used to be know as Gill the runner, now, Gill with the RSD. Comments like you should be used to the pain by now have all so bean said. I was told I did not like this person doing an activity because I could not do it my self. Told the RSD was caused by running and if I had stopped when told I would not have got RSD, I was not told to stop running. ANY BODY can get RSD though falling or an operation ANY BODY. Told I did not know what pain and suffering was as I was not old enough. RSD is one of the most painful condition there is. Once I was told quite rudely that I should not be in a shop on that thing (my scooter), comments like that can really hurt especially if I am down. If I went to bed at a normal time I would sleep, NO I would not I have tried. I go to bed between two and five am, mostly about four. When I so tired I usually sleep but not for long.
I was called a cripple, that really hurt. When I am in my wheelchair people talk to the pusher and not me as though I am are deaf or stupid. Some times people look at you and say there is not much wrong with you as I don't give in many times and carry on much the same when I can. Probably if I sat down all day or spent the day in bed or really played on it like some, people might think differently, but I am not like that. I need to be doing things if I can, if not, thinking about doing things


My RSD is most likely here to stay but there are things to help your self, like trying to remain positive enjoy things when you can. rest when needed, ignore people who think they know better than you, manage it the best you can after all who knows it better than you. Take no notice of people who don't care.
People walk away from very bad car accidents with hardly a scratch, I was so so unlucky to get what I did I did not deserve it. RSD is a very lonely disease as you are unlike to meet someone with the same, I can feel so isolated at times. With cancer there are so many people that have got it, or recovering from, so there is a lot more help and support.

Well I hope this better time keeps up and the pain stays low.

Love Gill

Five Years 2/3

Continued from 1/3


Yes there is lot of pain, different types nerve pain which burns like a fire from within that can strike at any time I think this is the worst pain. Muscle spasms are also very painful and can last days. If I just turn my neck a little too fast it can result in lighting pain shooting down my arm or arms sometimes actually paralysing temporary often the pain shoots up into my head and there it will give me one hell of an head ache. Then there is the every day pain which never goes away just subsides when it feels like it. All the pains can combine to become a living nightmare it often does. There is pain if somebody holds me just a little too long or tight. Pain that starts else where other than my foot, like if I hit my head or hurt my knee will often make my foot join in as it does not want to miss out.
Vibrations, bus journeys, scooter trips, cold, heat, noise, touch, weather changes and draughts can and will make it much worse. One minute I can be fine the next in extreme pain putting me in hospital this has happened many times three times at least at physio. My body just shuts down if put under too much stress or pain.
Once when in hospital last year, I had such severe full body muscle spasms that they lifted me off the bed, this went on for two days I pleaded with them to knock me out they did not. they just gave me more pain relief DIASAPAN was one of them, resulting in tripping out, pretty colours, far far away.
A minor illness can make things much worse and can take a long time to recover.
In RSD a pain scale is used, called McGill pain chart, where it is rated one of the highest there. Most of the time my pain is 7-8, ( on my scale) 10 being the highest, at the moment the pain is 4-5, so a good period. The pain never goes away but hangs in the back ground ready to pounce when it can. After time in hospital it can take a long time to recover and regain my strength. Another thing RSD does is extreme body temperature changes, one minute cold (I am mostly cold) the next sweating and red hot then freezing cold again. My foot is very sensitive at times to touch or cold drafts, noise and vibrations, at one time I could not where socks or even the softest slippers but fought the pain to where them again. My first physio told me RSD was like a spoilt child you had to control it not the other way round. I think there is a lot of truth in that. I have a cage on my bed to keep the quilt off my foot, this I have had since the first few weeks, I removed it once but the pain was too much.
I use a mobility scooter a lot of the time with a wheelchair when I am really bad. I can walk quite good on the better days.
I went to pain clinic but all they seem to want me to take more tablets. I tried Guanethidine blocks they were so painful I did not finish the course as it caused me more pain than relief. also tens machine this seemed to make it worse putting me in hospital on weekend away. I tried the MS therapy tank, the Hyperbaric oxygen chamber, this worked to a point but affected my ears and head very badly my body also had problems coping with the extreme temperature changes, again putting me in hospital.


Oxycodone for pain at present 20mg at one time Up to 120mg a day.
Gabapentin for pain up to 600mg a day.
Dihydocodeine for pain up to 800mg a day.
Ibuprofen for pain up to 2400mg a day.
Tizanidine a muscle relaxant 12mg a day.
Ibandronic acid 150mg a month for osteoporosis.
Calcium carbonate+Colecalciferol 3gram 20mg a day for osteoporosis.
Clonidine 50mg micrograms a day for temperature changes.
Ferrous sulphate (iron) 400mg a day for anemia.
Omeprazole 40mg a day for protecting stomach from tablets.
Furosemide 20mg a day for water retention
Ibuprofen gel as needed for pain.
Peppermint oil 0.6ml a day for ibs.
Sno-tears 10ml for dry eyes as needed.
Vitamin b12 injection 1 a week for 3 weeks, then 1 a month for 3months, then every 3 months for low vitamin b 12. these are for life.

I all so take Multi vitamins+probiotics
Ginkgo Biloba 600mg
Siberian ginseng 600mg
Vitamin c 500mg
Cod liver oil 400mg
All these are one a day
I use a lot of white Tiger Balm that is so good for pain and muscle tightness.
I also use Bio Freeze that is stronger and makes every thing cold but it also works very well.

On a good day I take 20 prescribed tablets, on a bad day it can be 40. I tend to alter the dose according to my needs, trying to keep in the prescribed dose as more make me feel ill and sick it is quite easy to over dose as all I want is the severe pain to go.

Before RSD I hardly ever took tablets for pain choosing to go for a walk instead.
I have physio once a week still, with the one and only Wietse, this helps I have up to 13 needles the average being 10, usually electric acupuncture, this does not cure RSD but helps in keeping it under control, sometimes. He massaged various different parts most weeks as the RSD is mostly all the right side now having spread, sometimes because I walk different my left hip really hurts. I had to come off crutches (2007) because of RSD spread to my shoulders and was in a lot of pain I missed them a lot as I could get round a lot faster.
I all so did races on them doing very well.
I was told it is highly unlikely I will be able to use a stick or other walking aids as it would make the RSD worse. My Fiibromyalia can be very painful. Some times its hard to tell what is actually causing what pain.


Carpel tunnel
Cronic fatigue
Vittimun B12 diffiency

IBS (Irritable Bowel Syndrome)


I do not sleep more than four hours a night, l only going to bed when very tired ,exhausted more the word. I have tried various tablets but none seam to work or if they do make me feel like a zombie for the rest of the day.
One night when on zopiclone I took four tablets in one night as I was desperate for sleep I pasted out but still only slept for three hours. So after that, gave up on any sleeping tablets.
Day or night I fall asleep sometimes just for a few minutes even stood up or talking, as my body is so exhausted a lot of the time.


I try to keep active when I can, either by walking or ridding my bike (when I am aloud by Wietse) I also have a cross trainer. I go to Pilate's and yoga at the present time. Some days it can be so hard as the pain can be too bad, but I am in pain doing nothing and sometimes exercise can help loosen tight muscles, it also has a feel good factor.
I also have a WII FIT which I try to use it can be good fun so long as I don't over do it.

To be continued...

Five Years 1/3

I can't believe its bean five years since this nightmare began. Well where do I begin, the beginning seems like a good place as any, so I will start there. It all began 13TH July 2004 no not Friday the 13TH, Tuesday 13TH, though a fall while running stubbing my toe on a raised ntl cover. It was a bad fall requiring an ambulance and four days in hospital. I hurt my hands, still got the scars my knees, still got the scars, my elbows still scars, my ribs, still got. My foot took a lot of damage resulting in a sprain at first thought this turned into three muscles tears which was later diagnosed as RSD, by my physio. I think the RSD set in the first few days after the accident because that's when my foot began to feel different even in the hospital my foot was turned in. Other changes took place, my foot felt like it was in a plaster, cold, sensitive, burning pain, blue and purple in colour at times. PAIN did I say pain I thought I felt pain, when I fell, this pain did not stop. Not being able to move my toes was all so a worry. When I was told I had RSD I felt some relief at first as I thought I was going mad.
The relief soon turned to horror as I was explained briefly about RSD. I was given a stick to help me get around. Physio did what she could, I was seen very quick I fell in July seen in September, some of the treatment I received was tens ,ultrasound and massage. All was very painful. I was prescribed TRAMADOL for the pain the first of my many, powerful pain relief tablets. A few weeks later I was given crutches (as I was leaning to the side with the stick), these I was on for three years. Only coming off them as the RSD had spread to my shoulder and using them was too painful. This slowed me down a lot.
After a while this physio felt she was not helping me and introduced me to Wietse, the one and only, he was to try acue puncher.


When I fell every body said I should claim compensation at first,I was not bothered but as time went on and things got worse I decided to pursue it. I contacted a solicator who said if the object you fell over is not a inch high it is not worth going any further. I got in touch with another one who said the same. The cover I tripped over was 5/8 inch high. If I had bean able to claim it would have bean a good amount, but it was not to be to, the money would have softened the blow. There is an advert on television Lawyers for you that states after an accident they will get what you are in titled to, that really gets to me.

LIFE CHANGES Before all this I used to run at least twice a week plus races at the weekend also extra training when racing . I delivered a free newspaper, about 700 of them walked every where or biked. Some body once asked me when I would stop running I said when I don't enjoy it any more. I never thought the choice would be taken for me. I ran because I loved to run not for fitness or weight loss, just because I loved it so much. Over night all this was taken away it has bean so hard to come to terms with, honestly I don't think I have still. The sudden deaths of both my parents only eight weeks apart Mum a few weeks before Christmas Dad a few weeks, after did not help the RSD only bean diagnosed a few weeks before. I have had a lot of things go wrong health wise, before RSD, but fought back to be a stronger person but this was very hard. I was told once I bounce back from most things but RSD has yet to be beaten. Be for RSD I took so much for granted like just getting up dashing to the shops I could pop to the shop near me and back be for the kettle boiled, not now. Some days
I am in too much pain to stay in and too much pain to go out. I still do most things my self like house work, cooking and gardening which I love, but I stop and take rests if I need to. Shopping is hard as it is very tiring where as before I would have walked into town and back I now use buses or my scooter..

To be continued...

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