April 1st

Physio at last, this is the first for five weeks.
Wietse and I talked about the extra burning pain at night I am getting, and suggested I take a extra GABERPENTIN after talking over with my doctor. I asked him about HYDRO THERAPY in a very warm pool, this might help me, my doctor is the one to see about it he said.

Wietse massaged my knee gently it was very painful as he gave it a good session. When he had finished it felt lighter but very sore. He put in the needles a few more than usual. I asked him about cover for when he is away or ill. He said that would not help me as he has got to know me and my RSD and knows how it behaves. Anyone else not trained in RSD would make it worse. This happened once before with a trainee Physio and I suffered for a long time. Five weeks is a long time though to go without physio.

Why could I have not got a more common thing that every knows about instead of this crap RSD?

After physio I did a little bit of shopping. When I got what I needed I went to the bus station where my knee dropped causing me to twist it very painful. I was lucky I did not fall. Earlier it had felt so good. When I got home I had a rest and felt a lot better.

Physio helps but it can be very painful to the point that I think twice about telling Wietse about any new pains that come on. I know the pain will go after he has massaged the area and will feel better the next day if not at the time.


Not a good day for my knee sore but I can cope. Lindsay, my daughter, and her boys are here. So its a noisy day today. We played with various things and it was a nice day outside as well.
Suey (her dog) did not come because she got attacked by two dogs when she was on her walk yesterday. She is cut and bruised and a bit shocked but she is aright, poor Suey.
Summer was looking for her and cried when she realised she was not here.


Fair night, I woke up a few times but managed to get back to sleep. I have started taking a extra GABERPENTIN before I go to bed. This is alright as I have bean on higher dose before but will talk to my doctor when I can get to see him. I was hoping to see him today as I am still having trouble with my chest and throat, and need to see him about the things I went over with Wietse. "There are no appointments left - try Thursday, " was all I was told.


A very rough night, some how I did not take my tablets and started to get withdrawal from the MORPHINE - sweating, cold, shaking and feeling very sick. This worried me as I am on the lowest dose I have bean on for a long time and did not expect this. What is it going to be like when I stop taking them. I have bean through withdrawal before and that was bad, even though I took a long time to gently ease down.


Physio again Wietse was pleased about my knee and massaged it again this time it hurt more and upset my foot. I do not think he was as gentle this time. He kept saying breathe Gill breathe. I tend to stop breathing when in a lot of pain.

The bus journey home was very bumpy and caused me more pain. I had to go to the doctors to pick up my prescription and its quite a way from town and also where I get off the bus. I picked it up and headed to the chemist but the pharmacist was not there so I had to go back. Already in pain but I had no choice.

After going back I had the choice to go back in to town again to get the bus or walk home as its about the same distance. I decided to walk home. Half way there and in trouble with a lot of pain and spasms. I sat down near a bridge and had a rest. Eventually I got home tired but pleased I was home. Made my self a cup of tea and had a well deserved rest. Paul is away for the weekend so on my own. A restful weekend for me!!

Pilates went well today. I was very tired and a bit weak but did the best I could. I made a cake for a friend as it was her birthday a few weeks ago but she was ill so I thought I would give her one now. She rang me later on in the day to say how good it was and to thank me. I had a lay down once I got home.


I am getting a lot of pain in my muscles, especially my legs. It feels like I have bean on a long run - if only. When I sit its worse and my legs just go crazy with pain. I have moved the blanket guard to the side of the bed instead of the bottom to see if that will help with the burning pain as the quilt is touching my legs and possibly making the pain worse. The extra GABERPENTIN I took is not helping so I have stopped it. I still have not got to see the doctor.
I bumped my head on a chair and have a big lump on my forehead.


A bad spasm during the night in the muscles around my collar bone paralysed both my arms the pain went all the way to my fingers. I have not had this before and hopefully will not again. It was very worrying.

Another nice day outside. We have bean very lucky with the weather, its more like summer (the season not my cute pup). I did some gardening. Took summer (the cute pup) out for a walk late morning and had a bad RAYNARD'S attack in my hands. I was surprised as it was warm.

My pain and spasms are still not good, lack of sleep does not help. How can I sleep even for a short time when in pain that does not go away. Most nights its 4am before I go to bed then I have broken sleep.


At last I have spoken to the doctor he has given me ANTIBIOTICS, 100 mg DOXCYCINEL, two to start with then one a day, for my chest and throat as its an infection as its three weeks or more since it started. I am also to take two GABERPENTIN at night to see if that helps with the burning. He hopes that will sort out the spasms as well. He is looking in to the HYDRO session for me. I told him about the new MORPHINE tablet OXYCODONE + NALOXONE he gave last time, that it was working so far he was pleased.

Later in the day I had my hair cut it looked very nice. I am lucky as my hairdresser comes to the house and has bean doing for a long time. She is a friend of my sons. She later dropped me at the doctors for my B12 injection, this one hurt a lot and continued to do so the rest of the day.


I think the extra GABERPENTIN is working as not as much burning at night. Time will tell as I have only taken four so far. A few spasms though. My arm is sore from my B12 injection and swollen.

I cleaned upstairs today and later went to my daughters house. I played with Jay-Jay and Tommy-Lee who were very pleased to see me. They are on holiday from school for Easter. Suey there dog, was a lot better but still sore. She also was pleased to see me also.

A lot of pain and stinging in my shoulders. This seems to happen when I walk for a while as my shoulders get tight. The blanket guard in its new place is helping my legs, not as sensitive at night. However the ANTIBIOTICS I was given a few days ago have upset my IBS.


Physio I asked Wietse to be careful with the needle he puts in my forehead as its still quite tender from the bump on the chair. I brought him up to date with last weeks adventures and the extra GABERPENTIN I now take at night also the ANTIBIOTIC I am taking.

This week he just put in needles no massage. He said next week he will give my knee a good massage, some thing to look forward to next week, I think not. I am away for a few days and this should help. (More about that at a later date). As he takes out the needles he always checks for any bleeding. Some times I bleed a lot. Just lately I have started to bleed a few minutes later, after he has got rid of the tissues. He calls it my delayed bleeding act.


Even though I have a lot of joint pain I have decided to try a run. I have not done any running if you can call it that, since March 1st. I set off, my run is a cross between a drunk and a carthorse, but its sort of running. The first few hundred yards my legs were screaming stop but as usual I carried on. This improved with more running. My chest was good apart from a bit of pain. I put that down to my lungs in protest as well as my legs. I did my usual run about 30 minutes. I had three stops. I think I did pretty well, felt good also. My running is as much for my sanity as my health and fitness. I usually take extra OROMORPTH before I run and that helps dull the pain. I could start a new craze running on drugs but I think that might have already bean done.


A lot of burning in the night in my legs could this be the run? In fact my legs felt better than usual but my shoulders felt sore and for some strange reason my right wrist hurt a lot. Very strange.
My luck has run out with my stomach behaving I think its a combinations of the ANTIBIOTICS and the extra GABERPENTIN I have bean taking so now I am back to being bloated and uncomfortable again, hopefully it will pass. I do hope so.
I did some work in the green house potting up tomato plants I have about 72. Also potted some marigolds. I have a potting bench so I am able to work out side which was good as the day was very warm. Summer spent most of the afternoon with me as well.


Pilates went very well until my right shoulder started to pop out again, I managed to manipulate it back in. Later on in the day it was going into spasm's. I took some pictures of the Pilates group which will be on at a later date.

I have pulled a muscle in my hand on the palm. A big lump has come up. I am having a job to grip things.



Wietse put in the usual needles, he put one in the left side of my neck, this one hurt a lot and was making my neck spasm. He said just try to cope with it the pain will go and it did along with the spasms. I think he had put it in a slightly different place. We talked about various things. On Saturday we Paul and I are going to see Andrew in Amsterdam. He told me to do a few exercises on the plane to help with spasms and pain. He massaged my hand and agreed I had pulled a small muscle and not to use it too much.

All the best to every one I hope you are enjoying the sunshine love Gill

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