Well here we are at the start of another year. What will this one bring? The last few days have bean quite hard because of all the extra people here. On the other hand it has bean good, having all the family together the first time for nearly a year. I am very tired but the more tired I feel, the less my body wants to sleep. A lot of spasms in my foot.
2nd
Got friends here today. Though not a good day, a lot of spasms thought out my body. Joint pain as well. My left hip is hurting just like before when I lift my leg. The lump on my right hand has not gone yet and I am finding quite hard to do things as I can not grip without it being extremely painful. Even getting dressed or putting on gloves hurts. I opened the door and pressed on the lump and pain shot towards my elbow. Not nice. I need to see the Doctor but he has bean away they are just taking phone calls for appointments so not much good for me. I keep to the same Doctor because of my on going conditions its easier that way.
4th
Pilates-
Quite painful today as everything hurts. I did my best I think I felt better after it?
Tried again to ring Doctors but he is still taking phone ins.
A very windy day. The walk on the common nearly blew me and Summer away. A nice walk though.
The wind did not calm down at all, It blew down the arch we have in the garden for the clematis to wind round, as I found out about 4am (5th) when letting Summer out for a wee before bed. I secured it as best as I could. The wind was blowing and it was cold . I know it needs renewing but have bean waiting for it to die off a bit. The weather has bean mild so it carried on growing.
6th
Physio - First a foot massage. I tried to move my toes they moved a little then went straight into spasm. They seem to get upset when touched. I can sometimes move them but not for long. My knee was next, this has improved. The swelling has gone down, I now have a knee cap. My hand next, still very painful. This week my shoulders were not touched as they were pretty good.
Got the new arch done so everything is good again.
9th
At last the Doctor is taking normal appointments. He looked at my knee and agrees with Vel that's it fluid and said Vel is doing a good job. My hand, he is unsure that its the carpel tunnel but more to do with a lump being under it. I am to go back if it does not improve. Got usual tablets, everything the same.
10th
I am going to see Wietse at his home. I miss him and his laid back approach to everything. After all he was my physio for about six years. I took him cake and a present. He ate the cake and said it was very good. It was homemade Christmas cake with rum. We talked about life his and mine. I saw his two cats, Dandelion and Burdock, very cute cats they are brothers and very different, one loves to go out while the other mostly stays in. The day was very good. He gave me a lift home as well.
Burdock
Dandelion
11th
Pilates - I was doing a leg and foot move when my foot then leg went into a very tight spasm. Not good. This travelled up my leg then straight to my shoulders. I tried to stretch it off but it just got tighter.
I went outside and walked around for a bit. After a while my body released a little. For most of the day it kept trying to spasm again. Not very nice and painful to say the least. I took two 400 mg IBUPROFEN then the same again later that helped. I took one BACLOFEN later just to hold the spasm off. This worked well. I only take these when needed.
12th
Cleaning up to day body very tight. I know if I keep moving my body will relax a bit. By the end of day everything was more relaxed. No more strong spasms.
13th
A very cold start, winters back again. The last few days had bean very mild more like spring or even Summer. On the common it looked like it had bean snowing very pretty.
I still ache from pilates. After a very bad spasms it feels like I have bean run over or involved in an accident.
Physio again today. Vel massaged my foot, knee, shoulders and neck. He said my shoulders and neck were extremely tight. As last week they were good. He has given me some exercises to do. Putting my head on my shoulder both sides (not at the same time) and on my chest. My neck is so tight it will hardly move. When Vel massaged my neck it sent a pain to the sides of my head. Most people when they have physio after a course of a few weeks they will improve. With RSD its an on going task just to keep everything ticking over. Then it does not always work. Hopefully I will soon be able to have ACUPUNCTURE again. I think with massage that for me works the best.
Later on a bad headache and neck trying to spasm up. I had to take two lots of IBUPROFEN to have any affect even then it was only a little. I also used TIGER BALM.
14th
Lindsay is here with the boys today. She has not bean very good so she has not bean here since Christmas week. Her thyroid levels at last have risen. But not without upsetting some thing else. Her enamel on her teeth has thinned out so she has to have them redone. Up to now she has not had any thing done to her teeth and has looked after them well, despite being a smoker. She was quite upset. At least this can be put right.
Did some baking later on as we have my brother and family here for tea and my friend and family here in the early afternoon.
I still have a bad head I think it might be the nerves in my neck again. I am trying to do the exercises Vel gave me but my neck keeps going into spasms. Bed late again but whats the point of going if I am in pain. Lots of spasms in my legs. I think my legs might be getting cold as the nights are colder again.
15th
Everything went well and I think we all enjoyed ourselves. I have still got a bad head.
16th
I am having my hair done today. I think that makes most people feel better. My hair looks very nice, as always when Helen does it. Still pain in head neck very tight. More TIGER BALM. I have now got the proper red one. Before it was only the cheap one. This comes from Thailand the same as the white one does. The red is stronger and a has different more herbal smell.
17th
Head pain a bit better but neck very tight. All my joints hurt even my fingers. I am going to have an easy day and try to rest as much as I can. A lot of the time sitting brings on more pain. A cold day, went on the common as usual and had a RAYNARD'S attack. My finger went white and were very painful. Took ages to get them warm and movable again. I had two pairs of gloves on as well. For the past few days I have not felt right. A far away feeling like when I was on lots of MORPHINE about 100+mg a day. Maybe it the time of year or just everyday life.
18th
Pilates I tried my best but my body at the moment is very tight and stiff. Every time I reached up I felt it going into spasm again. I managed some of the moves though. Later in the day misjudged the bathroom door and hit the side of my head twice. I think I lost my balance and tried to correct it, a graze and lump has appeared.
Running club AGM and running awards tonight. This is always hard for me as most of all I would love to be back at the club like before, running with every one. Even after seven years I still feel like this. It seems to be one step forward and about six back, just when things are going well something goes very wrong like in hospital for three weeks. Am I just kidding my self that things will improve or am I trying too hard?
19th
I feel not so good today, all my joints still hurt. Neck is very stiff I have not really done much of the neck exercises. Val gave me to do as neck is still going into spasm. My face has swollen up a bit but not too bad. Where it is red that does not hurt too much it hurts on my cheek bone and eye. Never mind I have had worse. The RSD does not help making it burn. Physio tomorrow so Vel will sort me out.
2oth
My face and eye have swollen up quite a bit. My cheek feels a little sore.
As you can see I think the bathroom door won this round. I am sure the RSD makes everything worse.
I have had a few comments today like have you bean in a accident. Some one asked if I had bean beaten up. One asked what the other person looked like.
Physio - Vel was very concerned about my face and had a good look at it and pressed it and asked questions. I assured him I was alright. He massaged my foot, it held off from going into a spasm for about 30 seconds, but soon released only to go back into one again. I think the massage is doing good because the spasms are getting shorter and not as intense.
Next my knee, the fluid has returned a bit so a little sore. When Vel massaged my foot it went into spasm again. My neck and shoulders were next. He said very tight and tender. A gentle massage this week. I think after all the pain of the last few days my body has reacted to badly and tighten up. My neck felt better after he has finished and no headache. My hand was left this week because the lump is quite sore. I think this session has helped more than last week.
21st
Heading to Wayne and Will's for the weekend. Summer is stopping with Lindsay at her house. She has not done this before . Lindsay and the boys have stopped at my house. I sure she will be alright as Suey will be there and they are best friends..
Don't leave me Mum.
Bed time - I like it here.
I think this is more my colour, on Lindsay's bed.
Shush...a busy day. Suey is under the quilt and Summer is laying on her.
Lindsay then put Summer in her basket where she stayed all night. She looks so sweet.
My face has swollen up quite a bit and my eye is about shut. Very windy on the common made it worse.
My eyes are very dry I have bean using SNOTEARS that helps but liquid runs down my face and makes it burn.
The journey to Halifax was very windy and blew the car from side to side. We stopped so I could have a walk around but the wind was so strong that it just about blew me away. We arrived at Wayne's house and I was in a bit of pain but not as bad as some other journeys.
After a cup of tea I felt better. We had dinner then disused where to go for a meal to celebrate Wills birthday.
We decided on Italian, the boys and Paul had starters. For main course I had lasagna very good. We all enjoyed the food. For sweet, everyone but Wayne had profiteroles. Home made the waiter said, very nice there were too. After the meal we all went back to Wayne's. Just watched a bit of TV.
Every one went to bed and I watched a film. Going to bed at 4am. I could not settle at all. My temperature changes have bean quite bad since Christmas and very up and down. I finally went to sleep about five am.
22nd
Awake again at seven thirty laid in bed, got back to sleep then up at nine. My face is down a bit now. Had a lazy day, playing a game and just talking. The journey home was good not as much pain as going.
Nice to be home. We picked up Summer, she had a great time with Lindsay and the boys and of course Suey.
We looked after Summer for you Nanny
She loved it here can she come again.
She even went in the car for a ride to Nanny B's house.
23rd
A better nights sleep, a new bed for next time Wayne please I think. I am at Pain Management today I am hoping to get some acupuncture. On arrival I had to fill in a chart with my pain for the last 24 hours. Also filled in other details.
I went into see the Doctor. He put his hands on my shoulder, knees and elbows. I said a lot of the time there were very pain in the joints and muscles. I asked him if he knew about RSD, he said he did. I was not convinced. He did not really ask many questions about my condition at all. He did ask about my head. I told him what happened. He then mentioned that I might need a Doppler test to check blood flow to my neck and brain. He then on to say that I need to go on steroids PREDNISOLONE for my treatment it will help and most of the pain will go. I asked why then have I not bean offered this before ( I was with the Pain Management clinic before). I am not keen on taking these as they can cause a lot more damage to my body. Also why had not bean offered this by my Doctor and Physios if its so good. He said the choice was mine to make. Also he wanted to start me a a LIDOCAINE DRIP to help as well. My mind was going wild with trying to take it all in. I said I will not start anything before I speak to my own Doctor and Physios past and present. I had to go for an ECG to check my heart was OK as the LIDOCAINE can cause damage to it.
I went for my ECG the other end of the hospital, about as far away as it could be. They asked if I would take it back to Pain Management as some times things get lost. I was now very tired. Had a cup of tea then went for the bus. On the bus I looked at the paper he had given me to pass to my Doctor. On it he had written a Prescription for the PREDNISONE 15mg for 7 days. That I knew about also he had put that I had got POLYMYALGIA. I was very confused. I thought he might have made a mistake. As no mention of it in the appointment. I was quite concerned as this is worse than FIBROMYALGIA.
I thought don't panic yet I will speak to Wietse, Vel and my Doctor before starting any new treatment.
After looking through a few sites I realized what the steroids were for, its a standard treatment for POLYMYALGIA . I do not think I have this at all. There is a blood test that can be done to confirm it so I will be asking for that. The LIDOCAINE DRIP is a treatment for RSD and pain but according to RSD sites works best in the early years. I have had RSD coming up to eight years.
25th
Pilates day did quite well could not do the arm up moves very well but managed the rest. Had a good talk with Wietse today and feel more assured. I will see Vel on Friday and talk to my Doctor on Tuesday (phone in). Then he will see me to sort things out I hope.
27th
Physio - Had a good talk with Vel. He said I need to insist on a blood test to prove either way if I have POLYMYALGIA. He also said with it being similar to FIBROMYALGIA its hard to diagnose but the blood test will confirm either way. My other conditions don't help either. I feel a lot better now and starting to get things sorted in my mind. Vel is against any tablets that are going to make me worse over all. I will have to wait for the blood test.
Pain levels are a little high, I sort of hurt all over but my joints are not as stiff. Vel went on to massage my shoulders and neck, using a new oil that warms up, a very nice feeling. My skin felt pleasantly warm for a while very nice. He also used white Tiger Balm. Thats all the I got treatment today. The rest of me was not too bad.
29th
Quite a lot of Pain today joints stiff and sensitive when touched. Russ is here with his family so that helps me to focus on something else. They seemed to have a good time.
Had a quiet evening. A lot more pain. Had a bath this helps but I can't stay in long as my RSD
foot swells up. I took some IBRUES. That helped a little. The worse time is when I am trying to sit my body just does not want to. It jumps and twitches and makes more pain so I can not sit for long. Up and down all night. Most nights are the same. I have forgotten whats it like to have a normal night time: to go to bed the same day I get up and sitting to watch a hour program without having to get up and walk around. But it could be worse.
31st
Spoke to Dr Metta at last. Told him all about what the Pain Clinic had said. I am having a blood test to see what it is today. The results will be back on Thursday, so not long to wait. He said I would be very unlucky if I have got it with everything else.
I said I am unsure of having any of the treatments they have offered because of the side effects and what it will to the RSD. I am back at Pain Clinic on Tuesday so I will be able to discuss it further. I am seeing a Physio this time so I might get what I really need which is ACUPUNCTURE.
Well quite a mixed month. It seems as I get older a more problems I get, it really worries me.
All the best to everyone.
Love Gill.
Love Gill.
