KNEE AND NAILS

JUNE 2ND

Tuesday night I went to Pilate's, my foot and leg kept going into spasms, so I had to keep stopping or not doing that part of the exercise. My face also bled a lot. (30Th may accident) Bed at 4.30. I am still awake at 5Am I thought the exercise would make me sleep, wrong again.

3RD

During the short night I was up at 8.30 my face stuck to the pillow so it bled again.
I had a go on the WII FIT at jogging, mines not really a run more like a lopsided sprawl.
It felt good though and I did get a good score. Both legs felt tight afterwards.

4TH

Physio Wietse was not that surprised when he saw my face as I was not too good on Friday when I last saw him. He thinks I probably had another blackout he did usual the needles hurt in my neck.

5TH

My legs are very tight and going into spasms its turned a lot colder so may be that why right leg is blue purple and swollen. I sorted out my running gear it made me cry to think I will never wear it again for running.I thought why me now I have nothing to aim for or look forward to. I can wear it for biking when I am given the go a head to do so. I have not ridden my bike since last September. I feel quite alone you would not think I would feel like this after nearly five years but I do.

9TH

Getting out of bed this morning my leg gave way and I dropped to the floor its happened before so I though nothing of it. My shoulder is tight and painful. Legs are both tight.
Pilates again I though the exercise would help the legs and relax my body, it did not seem to help. I walked down and got a lift back.

11TH

A lot of pain in my right knee, so much I have bean taking IBRUROFEN and
DIHYDROCODEINE up to 8 of each a day. Sleep is no better than it has bean going to bed between 3 AM -5AM and getting up 8-9 AM. I think I had another black out while washing up tea things as one minute I was standing up, the next I was slumped to wards the sink with my arms in the bowl and my sleeves wet, not knowing quite what was going on I did not hurt my self though. No physio this week Wietse is on a course I could have done with some massaging on my knee.

12TH

Went to a funeral today to say good bye to a friend it was so hard and it up set me a lot.

13TH

My knee really hurts it feels like my kneecap is in the wrong place if I walk in a way that my knee doesn't hurt my foot hurts. The top of my leg is very purple and cold I am thinking the RSD has spread some more, it is a concern.

14TH

In the early hours when most people are asleep I would like to be as well, I had a accident my leg gave way causing me to fall forwards the backdoor stubbing my toe, tearing off part of my toe nail, it bled a lot the toe nail still was attached by a little bit. The earlier accident when I kicked the ladder my toe nail did not come off.( Last blog.)

15TH

Another blood test requested by the hospital.
My knee is now very swollen and sore ankles also swollen my shoulder is all so pain full.
I went to look at a yoga class to see if it would be better than Pilate's I only went to watch but joined in the ones you could do seating on a chair I will be hopefully going back next week to join in properly.

16TH

Pilate's went for another session as 3 weeks was not long enough to see if is for me. My knee and shoulder stopped me from doing a lot but I managed a few exercises and the relaxation at the end, so it was not a total loss.

17TH

Went to bed at 5.30 AM
I did not sleep at all My knee and shoulder are bad but I don't think the pain kept me awake still taking a lot of IBRUROFEN and DIHYDROCODEINE I just did not feel tired.

18TH

Bed at 4.30 AM
I can't sleep any worse than last night, managed about 3 hours up at 8.30AM. Physio at last, Wietse to save me. He did usual needles then looked at my knee. He said it was twisted probably due to a spasm in the short night I have. He massaged it, stopping to get me to breathe, something I forget to do when in a lot of pain. He said the purple colour on my leg could be RAYNARD'S and may be not RSD. Something I had not thought about that. When I left my knee was throbbing and painful but I trusted Wietse so I know it would be alright soon.

19TH

Stormy weather I have a bad head it feels like it will split open. It is now very hot. I don't mind I can cope with the heat. Summer at last!?

22ND

Doctor for usual check and tablets . He said some of blood tests where back vitamin b12 was now too low, it had bean monitored for a while but has now gone down too much. Mine is 101, it should be between 170 -270, so I now need to start injections tomorrow one a week for three weeks then one a month for three months then once every three months. Other tests not back yet. Also given water tablets as he thinks I could be retaining fluid, as I have swollen ankles and legs. I do not feel to good today I think I might be in for something or it might just be the hot weather.
Late PM I felt very cold and not well I ache and have a bad head.


23RD


When I went to bed and slept I woke choking and not able to swallow, now very hot. I recover from that it has happened before (some thing to do with spasms in the throat). So I went back to sleep to awake wet through with sweat. My daughter came with me to the doctors as she was concerned as I was not well. While waiting to be seen I said knowing my luck, I have probably got swine flu. You should have seen the The look on peoples faces. The nurse gave me the injection she said it would sting, it did, but only for a few seconds. She said the injections were for life, something the doctor had not said. This is another thing I did not expect to happen, still waiting on more blood tests to come back I think next week.
I came home rested for the rest of the day my head was a real killer my eyes were sensitive to light and my throat was sore and my knee still hurt but not as much. Things can only get better. Paul (my husband) had gone to pick up Andrew (my son) from the airport as he and a friend had a few days in Amsterdam.

25TH

I feel a lot better today headache about gone. Knee is not as swollen as it was. My ankles and legs have gone down in size already and look much better. About six forty five, Paul was dreaming and kicked me very sharply on my bad foot, it woke me up and I screamed with the pain, it lasted for about two hours. Not too good as did not go to bed till gone five.


26TH

Physio again Wietse put in needles, the ear ones hurt today a lot. He did electric acue as normal. Toe nail has now come off.
When he took the ear ones out one of them bled but not the one that hurt the most he said it would bruise it did a bit but not too bad. Just after he took out the needles he made a surprise attack on my knee he just grabbed it. I said that was a bit mean , he said it was, just a bit.
My knee has improved but still painful he had to keep stopping to tell me to breathe something I forget to do when I am in pain. I asked about if I could ride my bike he said YES, but to be sensible.

27TH

Running club BBQ. It was a good night, no rain saw a lot of people I had not seen for a long time so that was good. There was cake, I had three lots. I would have had four but I don't like pavlova.

29TH


Pain levels are down at the moment about a three this is the lowest they have bean for a long long time. Maybe this is the start of better days or am I dreaming, no I cant be dreaming I don't sleep long enough.
Yoga tonight I joined in a bit more than last time but found it hard to keep up with the others, by the time I had looked at what they were doing and did it my self they had finished.
I will get better I hope.

30TH


Still very hot. I had my second vitamin b12 injection, this one stung for a lot longer.
The day has arrived at last I finely get to go on my bike did about two to three miles on it with Andrew (my son) to watch over me.
Pilate's again I did a lot better but foot kept going into severe spasms so had to stop on certain ones.

That brings me to the end of Junes entry, half way though the year all ready....
I hope you are all enjoying the sunshine and having less pain than usual.


Love Gill.

P.S





































This is the same drug (oxycontin) that I'm on so looks like I may have something in common.

[full story]

ROLLER COASTER

Wietse my very laid back friend and physiotherapist.




MAY 7TH

Physio again Wietse did the same as always, he told me not to move this time unless there is a fire or earthquake, or both. Needles in ears hurt more than usual. Brought Wietse up to date with all the changes and pain levels, he was pleased the pain was not as bad


10TH

I had a lay in today if you can call it that I went to bed at 5am and got up at 10AM. My foot is very stiff and tight, pain levels are up a bit 4-5 but that still good.

11TH

Full scale 10 +pain shot through my foot when I was putting on my boot it lasted about a minute its the sort of pain if some one handed you a gun you would use it on your self. The pain went just as it came, though out the day there were short bursts of pain on the same level. Its a very cold day so may be that's got something to do with it. My hand is still infected green stuff still ouses out it is still quite swollen.

13TH

I feel really bad today all my joints ache my head pounds, I feel very cold and shuddery but sweating as well I have most likely got a virus. Hope it doesn't spread to my PC . I have taken a lot of IBRUS and H CODEINE to help with the pain and to relax the muscles.

14TH

Physio - Wietse said I looked very pale I told him about all my aches and pains, when he put in the needles they hurt more than usual as the muscles seemed to stop them going in. After physio both Michelle and Wietse told me to go home and rest. Which surprising I did. Later on I felt very cold and had goose bumps on my legs and arms. My shoulders neck, knees, foot, in fact every where hurt. Bed at 4.30 awake a lot of the night with pain and spasms in most of my body.

18TH

Joints not as painful today, thank goodness may be the virus(?) is going? My body felt quite heavy but I was light headed. All of a sudden I felt very sick and wrenched a lot of times. I was not really that sick as had not a lot to eat all the same it made my stomach feel very sore. Though out the day I improved and by the end of the day I felt much better.

19TH

Today I went to my first Pilates Class. The lady asked me if I had ever done any like this before I said no. I could not even pronounce the name properly calling it paraletics. I decided to give this class a try as it was a disability class also I hoped it would help me relax and tone me. The class started I tryed hard to listen to her voice telling me what to do. I had to hold my self in, pelvis and bum and at the same time, breathe in and move my limbs then breathe out and still holding my self in, its at lot for my RSD brain to take in but I gave it a good try.All the exercise are done laying down or kneeling. The session ended with the mediation I listened to a tape tell me I was walking and going to a undiscovered place you are meant to totally relax as to shut out all other things, it did not happen this time. I will be giving it a month to see if my body will cope and to see if there are any benefits.

After the class Paul picked me up to go to the running clubs handicap (LINCOLN AND DISTRICT RUNNERS) at Whisby park it was a cold wet night. I was not sure if I even I wanted to watch as it is still hard thing for me to do as I miss running more than any thing. I manged to keep it together until some one shouted "HI MY PAST RUNNING BUDDY" the tears flowed, it was not meant to hurt me in any way at all, its just thats all I will probably be now. I mention it to the person and we hugged and talked, they said they had bean reading my BLOG and enjoyed it, as did a lot of the others that were there. The night was hard for me but I enjoyed it.

21ST

Physio again I asked if I could ride my bike now Wietse said not yet, get a bit stronger and as it may take too much out of me. I all so told him about Pilates he said it could be good for me try it and see how it goes. Usual physio.

Doctors appointment to see about tablets and for him to look at my hand (dog bite) its still infected he gave me some FUCIDIN cream as its only infected on the top.
I have had a lot of pain in my foot and shoulder also really bad headache but its very stormy so it might be just the weather playing my body up.

24TH

Did some gardening my foot was really pain full but I tryed to ignore it the best I could, a lot of pain in my knees also head still bad, shooting pain in neck. I feel very tired and drained. Very warm today.
My grandson Jay-Jay stopped the night and we went into town the next day, I got him more some new shoes as his dog Suey chewed up the last ones. He had a ride on the roundabout, and we did a bit of shopping. There and back he rode on the scooter with me, which he really enjoys. We both had a good day. On the way back I saw a dog that was not there I am seeing things that are not there a lot. Wietse said its because I am exhausted most of the time I need to rest more..

27TH

Burning pain in both legs woke me up very aburtly I have not had pain like this for a while. I have taken extra GABAPENTIN . Head a lot better now but a lot of pain in wrists. It never ends does it?

28TH

Lindsay my daughter and friends organised a fun day for the children at the local park I went along all the children were having a good time. Russ came down also, After a while I felt tired and my eyes felt weird so Russ and I decided to go home. On the way back I had a job to control my scooter my eyes felt so heavy I felt like I had bean drugged or drunk ( I was neither) I made it back with a lot of help from Russ stopping me from crashing in to things and going on to the road. I got back and rested. I felt a bit better later on but still not right.

29TH

I still feel strange but I will still go to physio as it helps my pain a lot.
Physio Weitse put in needles slightly difference place to hopefully help neck pain. Told Wietse about dog and seeing things he said its exhaustion I must rest more. I rested after the needles came out and even managed a few minutes sleep on waking I had a severe headache. As the session came to an end I began to feel worse Wietse Took me outside to get some air. We sat on the bench as I stood up I was very wobbly on my feet, and felt drunk again. Wietse got me a taxi and told me to rest and do nothing else today. I did not really feel much better for the rest of the day.

30TH

Early morning about 4am I was going to bed and some how I fell and hit the door frame in the bathroom grazing my face not too sure what happen, but I did not hit the floor.

31ST

My face is swollen and sore but my hand ( dog bite ) is much improved I actually feel more with it today. Did a little bit of gardening. Also a lot of resting. I had another accident I stubbed my bad foot on the ladder which was placed on the ground near the door. Suprisingly my foot stopped hurting after a normal amount of time. My foot bled and it looks like I might loose a toe nail. Its bean quite an eventfull month.

Well that's about it this time hope you are all well and having more luck than me. love Gill.

SANDY 15TH AND IMPROVEMENTS

MARCH 28TH

My little dog is 15 years old today, she is still very active and alert, she has cataracts on both eyes but still sees most things also she is a bit deaf. For her birthday she got a new basket. Sandy loves it when Tommy lee and Jay-Jay come round she joins in the playing especially football - which she is still very good at. When they have gone she falls into a deep sleep.

29TH

Went to watch Lincoln 10KM race there were more people taking part this year than any other it was a bright spring day. I only wish I was running a long side them all.

30TH

Blood test today to check things are doing as they should.
I dropped my ramp on my bad foot the pain was terrible then later on I ran over my good foot with my scooter more pain even my bad foot joined in. Not a good day.

2ND APRIL

Physio today Wietse put needles in ears and neck (electric for neck ). He did not do anything to my foot. My stomach is swollen and painful, it might be the iron tablets, or IBS who knows, not me.

6TH

The RSD pain has settled a bit at the moment, could be the warmer weather or the RSD just felt like it. The spasm's seem to be a bit worse more in my right shoulder, which is very stiff. My legs and of course my foot are tight and painful. Body temperature changes have bean all over the place one minute hot sweating full body the next shaking with the cold.

7TH

Physio again Wietse did usual needles also asked him to massage my neck and shoulders. The pain was so bad he had to keep stopping, he did the massage in 3 stages my foot started hurting as well as not to be left out. I have noticed that pain else where in my body and the foot usually joins in.

8TH

My shoulder and neck feel like I have bean beaten up.
I got bitten on my hand by a dog it was not his fault as I reached out to him after looking at the Lady's baby, he was only protecting her, and I should not have put my hand near him. The bites were very deep 3 in total 1 of them really deep Paul said I should go to the hospital but I did not.
My hand did not stop bleeding for about 10 hours it slowed down then started again.

11TH

My hand is swollen and very sore. rest of me not too bad pain is under control, temperature and spasm's are not.

16TH

Physio again, Wietse did usual acue, he asked me about my hand and said it looked infected. he went on to bathe it a lot of pus and black bits came out then he poured salt( he assaulted me) on it to draw any infection out it hurt lots, stinging like mad, he advised me to go to the doctors which I did doctor said it was very infected and put on antibiotics.

18TH

Hand has gone down a bit. A lot of green stuff came out. I feel far away or dreaming most of the time I wish I was.

20TH

In town today to get Tommy Lee and Jay-Jay some new shoes. I was very tired and in some pain more tablets and rest after which I was feeling a lot better.

21ST

Paul and I went to Skegness for the day it was very warm but I walked more than I should have so more pain and lots of spasm's in foot and legs.

23RD

Physio again usual stuff I asked Wietse if I can ride my bike which I have not ridden since October of last year due to blackouts and spasms he said not yet wait till it gets a bit warmer and I get stronger. Something to look foreward to. Went to doctors hand still infected he put me on more antibiotic's. I am to keep on morphine as he thinks it is helping with pain. I am to keep on iron as blood tests are back, iron has gone up a bit but not enough yet, also my vitamin B12 has risen slightly. Every thing else is all right.

24TH

I did some gardening not too much but I still ached, sweating and body temperature still remains the same. Getting feelings like electric shocks in my shoulder.

27TH

Not good for the sweating but good for the pain, the last week pain levels have bean down, about 3-4 on the mcgill pain scale (normally 6+). Wietse and I both think it has something to do with the weather being warmer and the extra morphine, but its still good I hope it keeps up.

29TH

Physio again, Wietse put needles in ears and neck, the neck ones hurt a lot, he wired me up for the electrics. He set it going it hurt a lot also. When he left the room my phone rang as I answered it I pulled the neddles and electrics out . When they come out they send little shocks on your skin it really hurts. When Wietse came back he put the needles back in and set the electrics going again. A bit later a sharp pain in my foot made me move again and the needles shot out yet again, because it was nearly time he stopped it there. He took out the rest of the needles. No massage of the foot today.

30TH

As I was putting my boot on a severe pain shot though my foot it made me drop to the floor the pain was horrendous it did not last long thank goodness. I think because my pain levels have dropped I have not bean quite so careful with my foot and I think it was a sharp reminder from the RSD as if to say I am still here.

1ST MAY

I had a instant fall asleep today, I was sat reading on the floor of the bedroom when I just fell asleep falling back wards hitting my head on the door frame or the floor I am not sure if it knocked me out but it caused a large lump on the side of my head . I know I was tired but that has not happen for a while. My hand is still infected green stuff still using out.

3RD

I did some green house work today pricking out my bedding plants . Today is colder than it has bean for a while but still a nice if not a fresh day. My foot went into a real strop when walking Sandy it just went into a full 10 pain level it stopped me in my tracks for a while till the pain went about 10 minutes there were no more pain on that level for the rest of the day thank goodness.

RSD is like a roller coaster ride its terrifying and you cannot get off until it has finished, with RSD

probably never. Well thats about it for now hope the RSD has bean kind to you.

love Gill.