A cold day sharp frost. A better day but spasms still keep coming. Every muscle thoughout my body is very tight. I am now on tablet five of ZANAFLEX this made me a bit unsteady on my feet and dizzy but on the whole the side affects are getting less. I think. Temperature changes are bad, mostly ice cold, so cold my legs hurt. I think this is why I get a lot of spasms but what can I do.
I have renewed the subscription for my website so I will be writing for another year at least.
3rd
Paul and I have bean looking at kitchens as we are getting a new one. This one we have had eighteen years. We have chosen one we both like. We actually agreed on one.
My neck and shoulders are very tight and painful. At least my knees are not as bad. Still feel very cold even though I am dressed for winter.
4th
A very cold day looks more like snow. Wayne has had seven inches in Halifax over night. Took him ages to get into work.
Pilates was very painful tight all over and spasms as well. I tried but failed to do the moves very well.
I am getting ringing in my ears again and dizzy on getting up. Somebody asked me how I felt today I said tired as usual head ache and pain just about every where. They said just a normal day then!! I have forgotten what a pain free day feels like. Even on my best days I still have pain.
Quite busy later cleaning the cooker I thought it might help loosen my body off a bit.
7th
Oh my head a real pounding pain, probably from lack of sleep I did not go to bed till 6 am. I was in a lot of pain so it was not worth going even then after a lot of extra tablets the pain would not go. I have starting taking an extra ZANAFLEX one in the morning as well as night time like before.
They have had little effect as yet on my muscles. This tablet made my eyes feel like they were six foot in front of me. Lindsay and the boys are here Suey as well ( Lindsay's dog.)
Summer laid on top of Suey
Suey some times gets fed up of Summer, notice the look she is giving her
Lindsay does not feel too good either we both feel a little delicate. Jay-Jay and Tommy-Lee were quite noisy today but they are young boys after all. I made Jay-Jays birthday cake it was his birthday a few weeks ago ,6th March but he got another cake. So he said he would have one made later.,
A Doctor Who cake.
Jay-Jay with his cake
Blow-- Jay-Jay, and Tommy-Lee.
My head ache finally went at around eight o'clock Only to return later. A lot more spasms in my legs. A weird feeling like sand or water running though them. I thought the ZANAFLEX were suppose to help this.
9th
A far away feeling walking on the common I do not feel with it at all. Balance all over the place. As the day went on felt better even sorted out a few cupboards. My friend is now home from hospital better than be for but not her self yet. My thoughts are with her. I will go and see her when she is ready for visitors.
10th
Today Summer is going for her trim and wash. A different place this time Posh Dogz. This place was recommended by a friend.
Looking very long haired.
Summer before trim.
We picked her up later and was pleased with the result. She looked so clean but not for long. She seemed very happy as well. They said she was a very cuddly dog.
Very smart.
12th
The Zanaflex has upset my stomach, very bloated and sore.
Looking after Jay-Jay and Tommy-Lee as Lindsay is at the hospital for a baby check up. She was soon home and everything is going quite well. She does look better than she has done for a while but her thyroid levels are still not right. She is a bit worried that it will affect the baby but the hospital are keeping a good eye on her.
After a rest we decided to go into town with the boys as a treat. We looked in Mothercare at the travel systems. Tommy brought some toys over for the baby. Lindsay told him that it did not need any yet and to put them back. He said but it has clothes already and it does not need them yet. The lady assistant said he had got a point.
We took them in the pound shop and they were very excited and got lots of things for there money. A gun, a sword walkie talkie set, a hat, a cross bow each and a car each plus a telescope to share. They could hardly wait to get home to try them out.
We went to McDonald's for dinner as like most children they enjoy it, I did too.
We did a lot of walking and was all very tired. I was hurting a lot when we got home, a good day though.
Jay-Jay and Tommy-Lee played with there new things. Running around playing and having fun
tiredness forgotten.
Later on I was in a lot of pain, about an eight, and spasms every where.
Had an email from Wietse he is doing well and so are his cats. I do miss him a lot. He could always cheer me up no matter how down I was. He always made me see the better side of things.
13th
Very bad spasms over night. My right knee is so swollen that I can hardly walk. Every muscle is tight. The ZANAFLEX has not really done any thing to help yet. I am trying to keep walking so my legs don't tighten up any more. This is hard as they keep going into spasms. As it is I can hardly get up the stairs.We have bean in the car a bit today so that did not help. I am taking extra MORPHINE. This has made me feel very dizzy and light headed. My legs is blue typical RSD colour. Ice cold most of the time burning the rest. My shoulders and neck have now joined in as well and feel the same. Took more MORPHINE later this helped a little. By the end of the night my whole body was in pain. About as much as I could handle. Damn this RSD curse.
14th
Wayne my oldest son is here for a few days from Halifax. Lindsay is here with the boys as well.
They got very excited when they saw Wayne.
My leg has improved very slightly I am able to move a little better but my right hip is very sore because of the way I was walking yesterday. I am so pleased but I feel far away because of the MORPHINE. Yes it works but at the cost of zombie like appearance.
I am going to start three ZANAFLEX to see if that will improve the pain and spasms.
15th
Today is a bit better day I long as I am careful my legs seem to be a lot less tight. Cooked a Sunday dinner for Wayne he is not used to having them so really enjoyed it. A nice quiet day just doing a few bits on the computer with Wayne. Later on I felt very tired, more than usual and a bit out of breath. Maybe I am getting a bug or something nasty.
16th
Pain and bad spasms over night for the past few weeks I have had a lot more temperature changes. Go to bed ice cold most places and wake up on fire.
Wayne is going home today. Timmy, his cat, will be pleased to see him. Decided to have a go on the WII to see if that will loosen my tight muscles. I am really fed up with this I have no life just pain if I try to do things that I love or used to do, I just get hammered by the pain and spasms. Later on a lot of knee and right hip pain.
17th
Going with Lindsay to get a travel system for the new baby. Very nice. Just need the baby now not just yet as its not due till October. Went to McDonald's for dinner had a wrap very nice. Pain not as bad, balance not good .
Passed out in the bath sat up, fell face down in the water coughing and spluttering. Woke up instantly. This was after the night time ZANAFLEX tablet. This is a bit scary. I could have bean like Whitney Houston. I am stopping them as so far they have done nothing. Apart from make me feel worse.
18th
Pilates
I tried my best but I feel that I am not getting very far. Jo said I am doing alright but I feel stuck. Some weeks as I have said before are better than others. None of them brilliant. Nice to see the others as there was no class last week.
19th
The big day is here. Up at seven thirty even though I did not go to bed till five thirty. Who needs sleep any way-- ME!! At last I am going to get some ACUPUNCTURE from Goppi. Lindsay had an appointment at the hospital so went the same time as Paul gave us a lift there even though my appointment was over an hour later. Lindsay's thyroid levels are improving. The hospital is quite pleased with her.
Back to Goppi and ACUPUNCTURE . I have to go to a FIBROMYALGIA clinic as this is the only way I can get this treatment. Two others were getting the same as me. They were supposed to be another three people but they did not turn. Did they know some thing I did not?
First there was a talk about FIBROMYALGIA and how and why it affects you. Also PAIN and distractions from the pain. A few exercises no problems with them, more or less the beginner's pilates. I told him I did pilates. He said that would help a lot, especially with the controlled breathing.
We then did a bit of relaxation, I have a big problem relaxing my body just starts jumping and shaking. Also my mind will not switch off. This is why I have trouble sleeping I think.
After the relaxation came the ACUPUNCTURE. I told him last time ( 7th Feb) he did ACUPUNCTURE on me I was very sick and my foot and leg very painful. He put needles in my RSD leg and foot even though I told him Wietse never did this ( tried but not repeated as too painful). This time he listened to me and did not put any in my right leg below the knee. In all I fifteen needles. In very much the same places as Wietse did. I was left to relax while they did there magic - I wish.
The needles were removed no problems this time. We had a few stretches then a bit more talking then home. I am back next week for another session. The other two people were very nice. I think the idea of the clinic is that we help each other and hopefully pass on a few tips. As you would have probably guessed no one there has RSD.
A lot better day than I thought it would be.
20th
Paul is going to Blackpool for the weekend so I will be mostly on my own.
Spoke to Dr Metta, he agrees that I should stop ZANAFLEX straight away. I told him I already had. Spoke about other pain relief. We have decided to wait to see what happens before trying anything else. He is running out of things to give me. DIAZEPAM was one of them but I had a very bad reaction to them once when I was in Hospital. He does not really want to put me on these again. So we will wait and see.
A bit of bad news. My blood tests he did last week have come back not good. My feratin level is very low, five-- this should be for me about twenty for me but can be around hundred. A doctor I saw online , says he doesn't like to see anyone below 50 but also doesn't get alarmed if it is. I think optimal is about 70.
This was good when last taken February second about twenty as I said. That could account for the extra tiredness and shortness of breath. This effects iron levels in blood as the feratin is like a basket to hold the iron, if too low, holes appear and the iron drops through. This could account for the extra tiredness and shortness of breath I am now to take IRON tablets. FERROUS FUMARATE 210 mg three a day. This will affect my stomach big time again. This had just settled after stopping the ZANAFLEX. I am thinking that I must be cursed or had a very bad past life. I have a lot of joint pain today most places.
21st
Not too good to day. Woke with a bad head very sharp nerve pain. I feel like I am getting something, something not nice.
Got the boys with me to day as Lindsay is packing and sorting things out in the house. They are very noisy. Not doing my head any good at all. Lindsay finally gets here she is tired but feels quite good. She is beginning to show now and getting a little baby belly.
My friend Russ is also here for the weekend. So nice to see him.
23rd
A lot of shoulder and neck pain first off. On Summers walk, pain in knees and elbows as well. Bean out today looking for a new fridge and tiles for the kitchen. We are having a new kitchen fitted soon. We did not find either, fridge or tiles.
I have still got the nerve head pain. This seems not to want to go. After writing this blog the pain in my shoulder and neck has got worse it always does as soon as I move my arm for a while. Things like typing and stirring things always make it worse also Summer just pulling a bit on the lead. I have forgotten what it is like to have no pain.
24th
Not a good day. I feel wrecked. Pain if I move. Pain if I don't. Poor Lindsay phoned from Spain where she is holiday for a few days. She has got she thinks food poisoning. The weather is cold there as well. I hope it picks up for her.
25th
Not a good night spasms just about every where. Coughing as well.
I still went to pilates as I thought if at least my muscles would release a bit. I did not do everything much but on the whole not bad. Jo has lent me a book on magnesium. It makes very interesting reading as most people levels are low. When I have read it I will pass on any information I think will help you all.
Late PM full blown cold I feel bad, extreme sore throat and banging head ache. My body feels like it has upped and left. I would not blame it either.
26th
Acupuncture today again. There was only two of us this week. The session pretty much the same as last week. I asked him about SATIVEX a CANNABIS alternative pain and muscle relaxant spray. . He said its not available in Linconshire as yet. I asked my own Doctor he said the prescription has to come from a specialist. I am thinking of giving this a go as what I have read about it seems good. I know things don't suit every one, But I have tried a lot of tablets and the side effects of some are horrendous.
I have not started taking my iron pills yet as I know they will cause severe constipation.
One tablet for this then another to help the side effects of another. What a life---
28th
Went with Paul to look at a car, a Vauxhall Zafira. He liked it so we bought it picking up next Friday.
I think my cold is beginning to let go. Still bad head and cough throat a little better. My eyes are blood shot and sore. I have bean swigging cough medicine straight out the bottle it says no more than four doses a day. Mines a long day so I am having a bottle a day. Sounds like I am drinking. Not yet any way..
Went to see my friend who was very ill in hospital but has bean home now for a while she is doing very well and making good progress. So nice to see her . All the very best to her and her family. Saw there little dog a westie like Summer for the first time he is a lot bigger dog, so lovely and like Summer very friendly. He could smell Summer and would not leave me alone.
29th
Raining again here. Since the drought warning, it has I think rained every day. Not just a bit- down pours. The common is very wet with large puddles every where. Summer loves the rain and runs straight through the deep ones. As you can imagine she comes back very mucky. Does she mind, not a bit.
Lindsay is here today with the boys they are back from Holiday. Lindsay is brown and recovered from her food poisoning. Very noisy here, Jay-Jay and Tommy-Lee are playing there guitars and singing to Horrid Henry. They are very high on fun. We all had tea Chicken dinner very nice every one enjoyed it . Summer and Suey had some as well.
Well thats about it for another month. I think I can say this has bean one of the worst for a long time, for contious pain and spasms. Bye for now. I hope things are better with you all out there, if not things can only get better I hope.
Very smart.
After trim and wash. So clean, I will soon change that.
12th
The Zanaflex has upset my stomach, very bloated and sore.
Looking after Jay-Jay and Tommy-Lee as Lindsay is at the hospital for a baby check up. She was soon home and everything is going quite well. She does look better than she has done for a while but her thyroid levels are still not right. She is a bit worried that it will affect the baby but the hospital are keeping a good eye on her.
After a rest we decided to go into town with the boys as a treat. We looked in Mothercare at the travel systems. Tommy brought some toys over for the baby. Lindsay told him that it did not need any yet and to put them back. He said but it has clothes already and it does not need them yet. The lady assistant said he had got a point.
We took them in the pound shop and they were very excited and got lots of things for there money. A gun, a sword walkie talkie set, a hat, a cross bow each and a car each plus a telescope to share. They could hardly wait to get home to try them out.
We went to McDonald's for dinner as like most children they enjoy it, I did too.
We did a lot of walking and was all very tired. I was hurting a lot when we got home, a good day though.
Jay-Jay and Tommy-Lee played with there new things. Running around playing and having fun
tiredness forgotten.
Later on I was in a lot of pain, about an eight, and spasms every where.
Had an email from Wietse he is doing well and so are his cats. I do miss him a lot. He could always cheer me up no matter how down I was. He always made me see the better side of things.
13th
Very bad spasms over night. My right knee is so swollen that I can hardly walk. Every muscle is tight. The ZANAFLEX has not really done any thing to help yet. I am trying to keep walking so my legs don't tighten up any more. This is hard as they keep going into spasms. As it is I can hardly get up the stairs.We have bean in the car a bit today so that did not help. I am taking extra MORPHINE. This has made me feel very dizzy and light headed. My legs is blue typical RSD colour. Ice cold most of the time burning the rest. My shoulders and neck have now joined in as well and feel the same. Took more MORPHINE later this helped a little. By the end of the night my whole body was in pain. About as much as I could handle. Damn this RSD curse.
14th
Wayne my oldest son is here for a few days from Halifax. Lindsay is here with the boys as well.
They got very excited when they saw Wayne.
My leg has improved very slightly I am able to move a little better but my right hip is very sore because of the way I was walking yesterday. I am so pleased but I feel far away because of the MORPHINE. Yes it works but at the cost of zombie like appearance.
I am going to start three ZANAFLEX to see if that will improve the pain and spasms.
15th
Today is a bit better day I long as I am careful my legs seem to be a lot less tight. Cooked a Sunday dinner for Wayne he is not used to having them so really enjoyed it. A nice quiet day just doing a few bits on the computer with Wayne. Later on I felt very tired, more than usual and a bit out of breath. Maybe I am getting a bug or something nasty.
16th
Pain and bad spasms over night for the past few weeks I have had a lot more temperature changes. Go to bed ice cold most places and wake up on fire.
Wayne is going home today. Timmy, his cat, will be pleased to see him. Decided to have a go on the WII to see if that will loosen my tight muscles. I am really fed up with this I have no life just pain if I try to do things that I love or used to do, I just get hammered by the pain and spasms. Later on a lot of knee and right hip pain.
17th
Going with Lindsay to get a travel system for the new baby. Very nice. Just need the baby now not just yet as its not due till October. Went to McDonald's for dinner had a wrap very nice. Pain not as bad, balance not good .
Passed out in the bath sat up, fell face down in the water coughing and spluttering. Woke up instantly. This was after the night time ZANAFLEX tablet. This is a bit scary. I could have bean like Whitney Houston. I am stopping them as so far they have done nothing. Apart from make me feel worse.
18th
Pilates
I tried my best but I feel that I am not getting very far. Jo said I am doing alright but I feel stuck. Some weeks as I have said before are better than others. None of them brilliant. Nice to see the others as there was no class last week.
19th
The big day is here. Up at seven thirty even though I did not go to bed till five thirty. Who needs sleep any way-- ME!! At last I am going to get some ACUPUNCTURE from Goppi. Lindsay had an appointment at the hospital so went the same time as Paul gave us a lift there even though my appointment was over an hour later. Lindsay's thyroid levels are improving. The hospital is quite pleased with her.
Back to Goppi and ACUPUNCTURE . I have to go to a FIBROMYALGIA clinic as this is the only way I can get this treatment. Two others were getting the same as me. They were supposed to be another three people but they did not turn. Did they know some thing I did not?
First there was a talk about FIBROMYALGIA and how and why it affects you. Also PAIN and distractions from the pain. A few exercises no problems with them, more or less the beginner's pilates. I told him I did pilates. He said that would help a lot, especially with the controlled breathing.
We then did a bit of relaxation, I have a big problem relaxing my body just starts jumping and shaking. Also my mind will not switch off. This is why I have trouble sleeping I think.
After the relaxation came the ACUPUNCTURE. I told him last time ( 7th Feb) he did ACUPUNCTURE on me I was very sick and my foot and leg very painful. He put needles in my RSD leg and foot even though I told him Wietse never did this ( tried but not repeated as too painful). This time he listened to me and did not put any in my right leg below the knee. In all I fifteen needles. In very much the same places as Wietse did. I was left to relax while they did there magic - I wish.
The needles were removed no problems this time. We had a few stretches then a bit more talking then home. I am back next week for another session. The other two people were very nice. I think the idea of the clinic is that we help each other and hopefully pass on a few tips. As you would have probably guessed no one there has RSD.
A lot better day than I thought it would be.
20th
Paul is going to Blackpool for the weekend so I will be mostly on my own.
Spoke to Dr Metta, he agrees that I should stop ZANAFLEX straight away. I told him I already had. Spoke about other pain relief. We have decided to wait to see what happens before trying anything else. He is running out of things to give me. DIAZEPAM was one of them but I had a very bad reaction to them once when I was in Hospital. He does not really want to put me on these again. So we will wait and see.
A bit of bad news. My blood tests he did last week have come back not good. My feratin level is very low, five-- this should be for me about twenty for me but can be around hundred. A doctor I saw online , says he doesn't like to see anyone below 50 but also doesn't get alarmed if it is. I think optimal is about 70.
This was good when last taken February second about twenty as I said. That could account for the extra tiredness and shortness of breath. This effects iron levels in blood as the feratin is like a basket to hold the iron, if too low, holes appear and the iron drops through. This could account for the extra tiredness and shortness of breath I am now to take IRON tablets. FERROUS FUMARATE 210 mg three a day. This will affect my stomach big time again. This had just settled after stopping the ZANAFLEX. I am thinking that I must be cursed or had a very bad past life. I have a lot of joint pain today most places.
21st
Not too good to day. Woke with a bad head very sharp nerve pain. I feel like I am getting something, something not nice.
Got the boys with me to day as Lindsay is packing and sorting things out in the house. They are very noisy. Not doing my head any good at all. Lindsay finally gets here she is tired but feels quite good. She is beginning to show now and getting a little baby belly.
My friend Russ is also here for the weekend. So nice to see him.
23rd
A lot of shoulder and neck pain first off. On Summers walk, pain in knees and elbows as well. Bean out today looking for a new fridge and tiles for the kitchen. We are having a new kitchen fitted soon. We did not find either, fridge or tiles.
I have still got the nerve head pain. This seems not to want to go. After writing this blog the pain in my shoulder and neck has got worse it always does as soon as I move my arm for a while. Things like typing and stirring things always make it worse also Summer just pulling a bit on the lead. I have forgotten what it is like to have no pain.
24th
Not a good day. I feel wrecked. Pain if I move. Pain if I don't. Poor Lindsay phoned from Spain where she is holiday for a few days. She has got she thinks food poisoning. The weather is cold there as well. I hope it picks up for her.
25th
Not a good night spasms just about every where. Coughing as well.
I still went to pilates as I thought if at least my muscles would release a bit. I did not do everything much but on the whole not bad. Jo has lent me a book on magnesium. It makes very interesting reading as most people levels are low. When I have read it I will pass on any information I think will help you all.
Late PM full blown cold I feel bad, extreme sore throat and banging head ache. My body feels like it has upped and left. I would not blame it either.
26th
Acupuncture today again. There was only two of us this week. The session pretty much the same as last week. I asked him about SATIVEX a CANNABIS alternative pain and muscle relaxant spray. . He said its not available in Linconshire as yet. I asked my own Doctor he said the prescription has to come from a specialist. I am thinking of giving this a go as what I have read about it seems good. I know things don't suit every one, But I have tried a lot of tablets and the side effects of some are horrendous.
I have not started taking my iron pills yet as I know they will cause severe constipation.
One tablet for this then another to help the side effects of another. What a life---
28th
Went with Paul to look at a car, a Vauxhall Zafira. He liked it so we bought it picking up next Friday.
I think my cold is beginning to let go. Still bad head and cough throat a little better. My eyes are blood shot and sore. I have bean swigging cough medicine straight out the bottle it says no more than four doses a day. Mines a long day so I am having a bottle a day. Sounds like I am drinking. Not yet any way..
Went to see my friend who was very ill in hospital but has bean home now for a while she is doing very well and making good progress. So nice to see her . All the very best to her and her family. Saw there little dog a westie like Summer for the first time he is a lot bigger dog, so lovely and like Summer very friendly. He could smell Summer and would not leave me alone.
29th
Raining again here. Since the drought warning, it has I think rained every day. Not just a bit- down pours. The common is very wet with large puddles every where. Summer loves the rain and runs straight through the deep ones. As you can imagine she comes back very mucky. Does she mind, not a bit.
Lindsay is here today with the boys they are back from Holiday. Lindsay is brown and recovered from her food poisoning. Very noisy here, Jay-Jay and Tommy-Lee are playing there guitars and singing to Horrid Henry. They are very high on fun. We all had tea Chicken dinner very nice every one enjoyed it . Summer and Suey had some as well.
Well thats about it for another month. I think I can say this has bean one of the worst for a long time, for contious pain and spasms. Bye for now. I hope things are better with you all out there, if not things can only get better I hope.
Love Gill.
1 comment:
I hope you still check this. I have CRPS type 1. Look into NRC doctors. I was on 13 meds and bedridden 90% of the time for two yrs. This all natural treatment saved my life. I'm off all the meds and up moving around most days. If you or anyone had any questions I can be contacted at mariab7380@gmail.com I'll be happy to help anyone to fight this awful disorder in any way I can
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