JULY-OUCH

1st July

The night was not a good one lots of spasms in my legs, pain seemed to be everywhere. The morning walk with Summer on the common did not go to plan. As we were going round one of the lakes I fell forward on to my knees. I did not hurt my self but it shook me up a lot.
On arriving home I realised I must have dropped my keys out my purse when I fell. I could not get in to the house. I had no time to go back to look as I was at physio in less than an hours time. I asked next doors if I could come through there house lucky they were in. I was able to get in my back door. I would have to go to look for the key later. On the bus I began to hurt I think the fall has made the RSD angry.

Wietse put in the usual needles plus one extra in my head. I told him about the fall, he said I looked a bit pale. I also told him about the heal lift I had put in my left shoe last week. It has made my hip feel a bit better not as much pain but made my right knee worse. Wietse said persevere with it and see how it goes. Wietse suggested this as my left leg is shorter than my right one. As it has altered my walking I may get some extra pain to begin with.

Went back on the common where I thought I had dropped the key and there it was at the place I had fallen. I was so pleased.

5th

Today not feeling too bad with average pain so I decided to clean and tidy the kitchen cupboards. All was going well till I slipped off the edge of the chair I was using to reach the top cupboards. My leg just slid down the side of the chair resulting in a graze from my knee to my ankle. Some of you might say I should not have bean on a chair but a step ladder. I find I have a bigger area to stand on with the chair so that's what I use. I don't go climbing very often as my balance can be a little off some days, When I first did it, the graze did not look too bad a bit red and sore but bearable. I even ran at the Club Handicap doing about two and a half miles in twenty eight minutes. I felt I did well, leg was a bit sore.

6th

Pilates a few new moves today. Joe likes to change the moves so it does not become boring. My leg was very sore it looked like I had gone over it with a cheese grater. Earlier I had put a dressing on it. Late that night/early morning the pain was so bad my nerves were going crazy the pain kept building up. I took OROMORPH even that at first did not control the pain I had to take about 2omls before it had any effect and even then it did not take all the pain away. A very rough night. More OROMORPH.

7th

I have decided to go to the Doctors just to get it checked over. The Doctor was a new one, Dr Comfort, he was replacing one that had retired, he was very nice. He looked at my leg, the dressing had stuck to the wound, but he could see it was not good. He saw by my records that I was on strong painkiller so did not offer me any thing more for the pain. He said I needed to see the nurse to get it properly dressed, trouble was the nurses were having a meeting for an hour I had no choice but to wait. By now my leg was bleeding and painful.

At last it was my time to get my leg done by now it was very painful. The nurse had to use saline to remove the dressing I had put on it looked a mess very red and sore.
The dressing she used is for burns called ATRAUMAN it does not stick and helps healing. Over the top of this went a foam to protect the leg from getting knocked called TEGADERM FOAM then over this went a stocking to keep it all in place. My leg felt very sore and painful the nerves were very mad. RSD in overload. I was in need of some pain relief. I am to go back to have it redressed tomorrow and she will check it again for infection. Home at last, more OROMORPTH. The pain is real bad burning and jumping I hope it dies down soon.

8th

A very rough night with extra extra pain, took loads of OROMORPTH and IBRUES they hardly touched the pain.

Physio- Wietse looked at my leg he was pleased with the way the nurse had dressed it. He knew as soon as I walked in I had done some thing to my leg. He is very observant. Usual needles plus some in my right hand and left foot Wietse said they should help the pain.

Summer is going for a trim as she is very long haired now, and after a walk she is covered in seeds and green bobbles from the common. They take a lot of brushing to get off.

She looks so Sweet like a new little lamb. She stopped in the car with Paul while I had my leg redressed it looks very red, sore, hot and swollen and slightly smelly. The nurse is treating it as a burn.

She said the nerves have bean exposed as I have taken off quite a few layers of skin and that is why there is so much pain . I explained about the RSD. I am to try to rest it and keep it raised when I can.

New dressing on.

My leg has gone the typical RSD colour and keep going into spasms. Putting it up does help a bit but as soon as I stand the pain and RSD colour floods back.

9th

Awake most of the night with pain hardly any sleep. My knee and ankle have ballooned and are more painful. The ankle is the worst where it was first injured when I fell and got RSD seven years ago.. Later on my ankle got even bigger. Taking a lot of morphine.






11th

Today I am back at the Doctors to have my leg redressed again. My leg and foot are still very swollen. When the nurse took off the dressing it smelt terrible she took one look and said its badly infected. A swab was taken also to see what infection it was. I thought it was as it has bean weeping through the dressing which was wet. A lot of dogs including Summer had bean stiffing at it. My leg was very RSD colour right from my knee to ankle. I was put on a course of antibiotics ERYTHROMYCIN 4 a day for seven days. These could be changed if the infection is something different to what they thought. I am to keep the dressing on till the 14th and not disturb it.

I don't know how much of this swelling is infection or RSD. The nurse thinks most is infection.
As the tablets begin to work the swelling should go down. I had my B12 injection as well,this one did not hurt too bad I think with all the other pain it was not noticed by my brain.

12th

Its my Daughters birthday today. Paul and I got her a Bench top, a Guardian Angel key ring and some skin cream. I also made her a cake, but that did not turn out very good. She also got some money. I went round in the morning to see her. She got lots of cards and presents. Paul and I went at night to see her as well.

13th---seven years since I fell and got RSD (see separate blog)

My foot is so swollen that I am having trouble getting any shoes on every pair are tight. I have bean wearing my sandals even in the rain. I am not at Pilates today as it would be too painful. I am still taking a lot of extra MORPHINE, its playing havoc with my eyes. I need it thought the pain is bad.

14th

Back to see the nurse to get leg redressed, it looks a bit better still very red and hot with the skin hanging off, it is not a pretty sight.





Foot and leg are still very swollen. The ANTIBIOTICS I was given are the right ones. I can have a bath now but not to stay in long.



That will be good as the warm bath eases my muscles and bones. The bath was heaven but very sore on my leg. This is the first day I have cut down on the MORPHINE. Bed at about 3am, slept for about four hours. The first time since I did my leg.

15th

Physio- Wietse looked at my leg and said it looked bad but normal for a RSD leg. He was pleased the way it was looking. Later in the day I was very light headed I think the MORPHINE or lack of it, has a lot to do with it as my body has got used to having more than normal and is crying out for it. I feel quite sick and hot withdrawal signs. My body seems to make more pain, so I will give it more MORPHINE.

16th

A very rough night hot and cold a lot worse than normal, a lot of pain. My foot and leg have gone down a bit but still having trouble getting my shoes on. Paul and I are at Jay-Jay and Tommy-Lees school fair, it had to be inside as it was raining again we have had a lot of rain this summer. The fair was very good and well attended.

17th

A better night. My leg is improving bit by bit I can now see why it is bean treated as a burn as it looks just like one, the smell from the infection has gone. I am helping Paul a bit to rub down paintwork as we are decorating the stairs and hall way. I can not do it for long as my shoulders and hands hurt but I did a little to help. The ANTIBIOTICS have played up my IBS. Stomach is swollen and sore.

18th

Back at Doctors the nurse said my leg has improved a lot, it still looks very nasty and is still very sore but I think the worst is over. She wanted me to go back on 21st/22nd, I asked if I could dress it myself. She said I could, but to look out for any changes after the ANTIBIOTICS finish. I am to go straight back if any thing changes for the worst. I can put a little moisturiser on it as well. Temperature changes are bad my body is still asking for the MORPHINE. I am getting a lot of spasms also in my legs. I feel quite a lot better all round. I think the extra pain and the infection was too much for my all ready batter body to take in.

20th

I am back at pilates, leg was quite sore but is improving. I enjoyed it a lot it was nice to be back again. Very tired after the session. Paul and I have bean putting the things back in place after the decorating.

21st

Better night all round less pain and soreness. Slept for about four hours.

Today is Jay-Jays school play Musical Madness. Music through the ages starting with Elvis Presley. For today that was Jay-Jay, he was brilliant he acted his little heart out putting every thing in to it. When finished he got a very loud Cheer, especially from his brother who was seeing it for the second time at least.



We all enjoyed it so much. The music went on with The Beatles, Abba, Micheal Jackson, Steps, Spice Girls and then to finish Take That. All the children did very well a lot like Jay-Jay and Tommy-Lee are going to a different school after the holidays. I think they left in style. The teachers should be very proud of them all.

22nd

Crap night sleep.I realised when I came down stairs that I had not taken my night time tablets my MORPHINE one also. I think that is why my night was worse than normal. I have taken so much extra Morphine that my body can not do with out it and goes into withdrawal. Normal dose is 10 mg a day. My leg is very painful and looks very red.





I hope its not infected again. The swelling has gone down . I have redressed it so I hope that helps with the redness. Wietse is ill so no physio today I could have done with talking to him as well. I hope he gets better soon.

24th

Went with Lindsay, Jay-Jay, Tommy-Lee and Paul to a Fun day at the football ground. The boys had there faces painted and had various goes on the stalls. The day was very warm and enjoyed by us all.

25th

My leg has calmed down and looks a lot better not as red and painful. The RSD has calmed down for the first time since I did it. The sensitivity has bean very bad even the slightest touch had me nearly shooting out my skin.



I feel very tired and achey today maby the last few weeks have caught up with me, with less sleep than normal.

26th

Doctors today for tablets and update on how I have bean. All tablets are to stop the same. He is pleased with my leg. I no longer need to dress it now. I am to start using the cream again for my nose as its starting bleeding quite a lot again. I feel quite a lot better today. The extra MORPHINE I was taking has now stopped. My body got quite used to it very quick and I have had a few withdrawal symptoms . I hope that they will now settle down.

27th

Pilates was good. I am really enjoying it, the other ladies and one man are very nice and it makes it a lot more than just exercises. I know it has helped me a great deal in balance and confidence.

29th

Physio Wietse is back all better now. I showed him my legs he was very pleased the way it had healed. Usual needles and a talk. I told him about a program I had watched about what happens to your body if you do not get enough sleep. (Many hours with out ) The brain just switches it off yes what ever you are doing it will just cut out. This is to protect your body from futher damage. I think this is what was happened to me a few years ago when I was falling asleep every where, even stood up. I was dianosed with possible NARCOPSY. I get a little more sleep than I used too. On average three to four straight sleep a night. Maybe with a few minutes in my chair during the day. Makes you think dont it.

30th

My oldest son Wayne is coming from Halifax to spend the weekend with us. Today is his Birthday 32nd. We got him a jumper, shower stuff, a shirt and he had already had money. Lindsay and the boys also are here. We, Paul,Lindsay,Jay-Jay Tommy-Lee, me and of course Wayne are going for a chinese meal at an all you can eat place. Jay-Jay got a bit carried away with the chocolate from the fountain he had a big bowl full with a little bit of ice cream in it. There was chocolate all over his hands. Tommy-Lee was still there so Lindsay and I went to see what he was doing, half expecting him to have his head in the fountain or be on the table. He was neither just stood there like a little Angel with all his curls. With the fountain being on the table Jay-Jay could not see what he was doing as he had to hold his bowl at arms length. The meal was enjoyed by us all.

31st

Wayne and I are packing up Andrews computer to send to him in Amsterdam. I need his help to make sure I have packed every thing. Wayne certainly packed a lot into this visit even going next door to help them out with a printer problem. Going to see Lindsays new house as well.
We got Andrews computer mostly sorted. yards of bubble wrap and strong boxes. The rest I can do later. All too soon it was time for Wayne to go. Its bean a good weekend and so nice to see him the last time was Christmas.

Finally my leg has improved so much and back to RSD normal. I am so pleased, its bean a very painful month.



As you can see much improved.


Well that's about all, till next time.
Bye for now love Gill.

THE SEVEN YEAR ITCH

Today it has bean seven years since I fell. The fall that started this, RSD nightmare.
I was told it was a sprain to my foot. This would recover very fast and I would be back to running in no time at all. Treat it as a good rest before cross country season begins, I was told.
Things were not to be that simple were they. Then , RSD was diagnosed. Like most people I had never had heard of it. When I was told a little about it. I did not want it. As with most things I did have that choice.

The long road has not bean easy. A terrific amount of pain. Pain that does not go away, does not really respond much to anything, other then the strongest medication. That leaves you in a zombie state. Even then it does not take the pain away for long. The pain can vary so much not bad one minute the next off any pain Scale. The pain is there for one reason only, to make me suffer. The sensitivity can be bad at times the slightest touch is agony.

My leg and ankle swell like a balloon. The RSD colour is like a warning to keep away as the slightest touch will have me in great pain. The spasms can go on for days usually striking at night. They are often full body ones. The RSD has spread, most of my right side is cursed by it

I spent over three years on crutches. At one point I was doing races from three miles to six miles. If I got the swing right I could go quite fast. These were taken off me because of the RSD spread to my shoulders. This caused extreme PAIN. I said how will I walk without them? My physio said you wont to start with but you will learn. Learn I did, but not without pain. This was a set back but I was soon out and about again but not as fast.

My RSD might be a little different from yours but basically they all mean pain. I have other things going on like FIBROMYALGIA, OSTEOPOROSIS, B12 DEFICIENCY,CARPAL TUNNEL CHRONIC FATIGUE and RAYNARD'S plus a few not as bad. Also most of the time I am border line ANEMIC . These do not help at all at times its hard to tell whats going on. Too much.

RSD stops a lot of my life. I have to fight back, and fight I do. I do the best I can, when I can. I have a scooter for bad days and a wheel chair as well. I try to get by without these to lead as near normal life as possible. My life was not normal before but in a different way, more crazy.

I have tried various treatments, HYPERBARIC OXYGEN TANK, TENS MACHINE, GUANETHIDINE BLOCKS. The TENS and the BLOCKS did not really help. I thought they did to start with but I think I wanted them to work so much. After using the TENS a few times, on different settings, I ended up in Hospital. My body started to give in and shut down. The blocks were too painful for my very sensitive foot. The Tank worked quite well but the temperature changes and pressure to my body was also too much. Very bad head (burst ear drum the year before) and ear pain dizzy also this put me in hospital as well.
I think the RSD takes so much from the body there is little left to fight any changes or illness off. As when I get a virus or cold it takes more time to recover. A virus can put me in Hospital for a few days or like last year three weeks. (Water infection then water retention)

Tablets play a very big part in my life. Its a case of taking enough to get by with out putting my self in zombie land. MORPHINE and GABAPENTINE are the main ones.

Here is a list of Prescribed tablets I take daily. Plus others.

Omeprazole 20mg. 1- This helps my stomach deal with the strong stuff.
Baclofen 10mg. 1- half morning/half night. A muscle relaxant.
Colecalciferol 400unit. 2- Osteoporosis.
Cyanocobalaim 1mg/1ml- Injection every three months for b12 deficiency.
Dihydrocodeine 30mg. 8- if needed. For Pain.
Ibuprofen 400mg. 8 - if needed. For Pain
Gabapentin 300mg. 2- For Pain.
Oxycodone 5mg/Naloxone 2.5mg. 2- For pain the Naloxone helps with constipation.
Peppermint oil2ml. 2-for IBS.
SnoTears1.4%. Eye drops- when needed.
Ibandronic Acid 150mg. 1 monthly for Osteoporosis.
ORAMORPH 10ml/5ml- For breakthrough pain. Every 2 hours if needed.

I use Bio freeze and Ibuprofen Gel also Difflam Cream and Tiger Balm all for Pain Relief. They all work very well.
I also take Laxatives Lactulose oral. Also Laxido Orange most days.
I all take Vitimin C, 500mg Gingko Biloba , Siberian Ginseng and Echinacea.

I try to take as little as possible strong pain tablets, but when things go to extreme pain mode, all these put together are not enough.

The side affects are bad ,constipation, nausea, headaches, extreme tiredness yet insomnia and very dry eyes. Without I would not cope, I could not cope. The dose now is the lowest I have ever taken. I just get by. I have got to retrain my body to help its self. I do most things every day even a little running now and again.. Some thing I thought I would never do again. I would love to line up at a big cross country race like The Nationals, but I do not think that will happen, but I did not think I would ever run again so who knows? I also do Pilates most weeks I know this has helped a lot with my balance. Also helps strengthen muscles that are week.

Sleep is all most non existent(INSOMNIA) and has bean for a long time. Even with the strongest tablets it does not happen. I do not take any sleeping tablets now at all. I go to bed when I think I can sleep. Most nights about four am some times I do not go to bed at all. If I am lucky and the pain will let me, I will get a few hours sleep about three or four. I fall asleep some times even when stood up as my body is so tired.

RSD can not be cured but can be tamed. The work is hard and a lot of it. I feel I have got some where, only to be knocked back down again. After a while this gets to me but I keep getting up again as if I don't, no you else can do it for me. Some people give up when the going gets tough but if you do you have no quality of life. I want to live as close to a normal every day life as I had before.

I have a wonderful Physio for about six years now, that gets the best out of me and gives me loads of advice. He knows about RSD and has treated it in the past. He does ACUPUNCTURE every week I go, and massage when the pain will allow him to. If I am in a lot of pain he will not touch that bit so it does not get more upset. There is no specialist here so he is my one and only. I have a good Doctor also. When I first went to him with RSD he had heard of it but never seen it. Since me getting it he has researched it and also bean on my blog. I am lucky in a way as I was diagnosed early.

As you can see there is life after RSD IT IS NOT THE END even though at the time it feels like it. I know not every one will fight back, but I think you need to and tell this RSD you are the boss. There is not really any research here like in some other country's. So a cure is a long way off, if there is one at all.

I hope you have enjoyed this Seven Year Itch post.
KEEP FIGHTING
Bye for now, Love Gill.

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