Continued from 1/3
PAIN
Yes there is lot of pain, different types nerve pain which burns like a fire from within that can strike at any time I think this is the worst pain. Muscle spasms are also very painful and can last days. If I just turn my neck a little too fast it can result in lighting pain shooting down my arm or arms sometimes actually paralysing temporary often the pain shoots up into my head and there it will give me one hell of an head ache. Then there is the every day pain which never goes away just subsides when it feels like it. All the pains can combine to become a living nightmare it often does. There is pain if somebody holds me just a little too long or tight. Pain that starts else where other than my foot, like if I hit my head or hurt my knee will often make my foot join in as it does not want to miss out.
Vibrations, bus journeys, scooter trips, cold, heat, noise, touch, weather changes and draughts can and will make it much worse. One minute I can be fine the next in extreme pain putting me in hospital this has happened many times three times at least at physio. My body just shuts down if put under too much stress or pain.
Once when in hospital last year, I had such severe full body muscle spasms that they lifted me off the bed, this went on for two days I pleaded with them to knock me out they did not. they just gave me more pain relief DIASAPAN was one of them, resulting in tripping out, pretty colours, far far away.
A minor illness can make things much worse and can take a long time to recover.
In RSD a pain scale is used, called McGill pain chart, where it is rated one of the highest there. Most of the time my pain is 7-8, ( on my scale) 10 being the highest, at the moment the pain is 4-5, so a good period. The pain never goes away but hangs in the back ground ready to pounce when it can. After time in hospital it can take a long time to recover and regain my strength. Another thing RSD does is extreme body temperature changes, one minute cold (I am mostly cold) the next sweating and red hot then freezing cold again. My foot is very sensitive at times to touch or cold drafts, noise and vibrations, at one time I could not where socks or even the softest slippers but fought the pain to where them again. My first physio told me RSD was like a spoilt child you had to control it not the other way round. I think there is a lot of truth in that. I have a cage on my bed to keep the quilt off my foot, this I have had since the first few weeks, I removed it once but the pain was too much.
I use a mobility scooter a lot of the time with a wheelchair when I am really bad. I can walk quite good on the better days.
I went to pain clinic but all they seem to want me to take more tablets. I tried Guanethidine blocks they were so painful I did not finish the course as it caused me more pain than relief. also tens machine this seemed to make it worse putting me in hospital on weekend away. I tried the MS therapy tank, the Hyperbaric oxygen chamber, this worked to a point but affected my ears and head very badly my body also had problems coping with the extreme temperature changes, again putting me in hospital.
MEDICATION
Oxycodone for pain at present 20mg at one time Up to 120mg a day.
Gabapentin for pain up to 600mg a day.
Dihydocodeine for pain up to 800mg a day.
Ibuprofen for pain up to 2400mg a day.
Tizanidine a muscle relaxant 12mg a day.
Ibandronic acid 150mg a month for osteoporosis.
Calcium carbonate+Colecalciferol 3gram 20mg a day for osteoporosis.
Clonidine 50mg micrograms a day for temperature changes.
Ferrous sulphate (iron) 400mg a day for anemia.
Omeprazole 40mg a day for protecting stomach from tablets.
Furosemide 20mg a day for water retention
Ibuprofen gel as needed for pain.
Peppermint oil 0.6ml a day for ibs.
Sno-tears 10ml for dry eyes as needed.
Vitamin b12 injection 1 a week for 3 weeks, then 1 a month for 3months, then every 3 months for low vitamin b 12. these are for life.
I all so take Multi vitamins+probiotics
Ginkgo Biloba 600mg
Siberian ginseng 600mg
Vitamin c 500mg
Cod liver oil 400mg
All these are one a day
I use a lot of white Tiger Balm that is so good for pain and muscle tightness.
I also use Bio Freeze that is stronger and makes every thing cold but it also works very well.
On a good day I take 20 prescribed tablets, on a bad day it can be 40. I tend to alter the dose according to my needs, trying to keep in the prescribed dose as more make me feel ill and sick it is quite easy to over dose as all I want is the severe pain to go.
Before RSD I hardly ever took tablets for pain choosing to go for a walk instead.
I have physio once a week still, with the one and only Wietse, this helps I have up to 13 needles the average being 10, usually electric acupuncture, this does not cure RSD but helps in keeping it under control, sometimes. He massaged various different parts most weeks as the RSD is mostly all the right side now having spread, sometimes because I walk different my left hip really hurts. I had to come off crutches (2007) because of RSD spread to my shoulders and was in a lot of pain I missed them a lot as I could get round a lot faster.
I all so did races on them doing very well.
I was told it is highly unlikely I will be able to use a stick or other walking aids as it would make the RSD worse. My Fiibromyalia can be very painful. Some times its hard to tell what is actually causing what pain.
THINGS I HAVE NOW GOT SINCE RSD.
Carpel tunnel
Cronic fatigue
Fiibromyalia
Insomnia
Osteoporosis
Vittimun B12 diffiency
THINGS I HAD BEFORE
Anemia
Arthritis
IBS (Irritable Bowel Syndrome)
Raynauds
SLEEP OR LACK OF IT
I do not sleep more than four hours a night, l only going to bed when very tired ,exhausted more the word. I have tried various tablets but none seam to work or if they do make me feel like a zombie for the rest of the day.
One night when on zopiclone I took four tablets in one night as I was desperate for sleep I pasted out but still only slept for three hours. So after that, gave up on any sleeping tablets.
Day or night I fall asleep sometimes just for a few minutes even stood up or talking, as my body is so exhausted a lot of the time.
EXERCISE
I try to keep active when I can, either by walking or ridding my bike (when I am aloud by Wietse) I also have a cross trainer. I go to Pilate's and yoga at the present time. Some days it can be so hard as the pain can be too bad, but I am in pain doing nothing and sometimes exercise can help loosen tight muscles, it also has a feel good factor.
I also have a WII FIT which I try to use it can be good fun so long as I don't over do it.
To be continued...
Five Years 1/3
I can't believe its bean five years since this nightmare began. Well where do I begin, the beginning seems like a good place as any, so I will start there. It all began 13TH July 2004 no not Friday the 13TH, Tuesday 13TH, though a fall while running stubbing my toe on a raised ntl cover. It was a bad fall requiring an ambulance and four days in hospital. I hurt my hands, still got the scars my knees, still got the scars, my elbows still scars, my ribs, still got. My foot took a lot of damage resulting in a sprain at first thought this turned into three muscles tears which was later diagnosed as RSD, by my physio. I think the RSD set in the first few days after the accident because that's when my foot began to feel different even in the hospital my foot was turned in. Other changes took place, my foot felt like it was in a plaster, cold, sensitive, burning pain, blue and purple in colour at times. PAIN did I say pain I thought I felt pain, when I fell, this pain did not stop. Not being able to move my toes was all so a worry. When I was told I had RSD I felt some relief at first as I thought I was going mad.
The relief soon turned to horror as I was explained briefly about RSD. I was given a stick to help me get around. Physio did what she could, I was seen very quick I fell in July seen in September, some of the treatment I received was tens ,ultrasound and massage. All was very painful. I was prescribed TRAMADOL for the pain the first of my many, powerful pain relief tablets. A few weeks later I was given crutches (as I was leaning to the side with the stick), these I was on for three years. Only coming off them as the RSD had spread to my shoulder and using them was too painful. This slowed me down a lot.
After a while this physio felt she was not helping me and introduced me to Wietse, the one and only, he was to try acue puncher.
CLAIMING
When I fell every body said I should claim compensation at first,I was not bothered but as time went on and things got worse I decided to pursue it. I contacted a solicator who said if the object you fell over is not a inch high it is not worth going any further. I got in touch with another one who said the same. The cover I tripped over was 5/8 inch high. If I had bean able to claim it would have bean a good amount, but it was not to be to, the money would have softened the blow. There is an advert on television Lawyers for you that states after an accident they will get what you are in titled to, that really gets to me.
LIFE CHANGES Before all this I used to run at least twice a week plus races at the weekend also extra training when racing . I delivered a free newspaper, about 700 of them walked every where or biked. Some body once asked me when I would stop running I said when I don't enjoy it any more. I never thought the choice would be taken for me. I ran because I loved to run not for fitness or weight loss, just because I loved it so much. Over night all this was taken away it has bean so hard to come to terms with, honestly I don't think I have still. The sudden deaths of both my parents only eight weeks apart Mum a few weeks before Christmas Dad a few weeks, after did not help the RSD only bean diagnosed a few weeks before. I have had a lot of things go wrong health wise, before RSD, but fought back to be a stronger person but this was very hard. I was told once I bounce back from most things but RSD has yet to be beaten. Be for RSD I took so much for granted like just getting up dashing to the shops I could pop to the shop near me and back be for the kettle boiled, not now. Some days
I am in too much pain to stay in and too much pain to go out. I still do most things my self like house work, cooking and gardening which I love, but I stop and take rests if I need to. Shopping is hard as it is very tiring where as before I would have walked into town and back I now use buses or my scooter..
To be continued...
The relief soon turned to horror as I was explained briefly about RSD. I was given a stick to help me get around. Physio did what she could, I was seen very quick I fell in July seen in September, some of the treatment I received was tens ,ultrasound and massage. All was very painful. I was prescribed TRAMADOL for the pain the first of my many, powerful pain relief tablets. A few weeks later I was given crutches (as I was leaning to the side with the stick), these I was on for three years. Only coming off them as the RSD had spread to my shoulder and using them was too painful. This slowed me down a lot.
After a while this physio felt she was not helping me and introduced me to Wietse, the one and only, he was to try acue puncher.
CLAIMING
When I fell every body said I should claim compensation at first,I was not bothered but as time went on and things got worse I decided to pursue it. I contacted a solicator who said if the object you fell over is not a inch high it is not worth going any further. I got in touch with another one who said the same. The cover I tripped over was 5/8 inch high. If I had bean able to claim it would have bean a good amount, but it was not to be to, the money would have softened the blow. There is an advert on television Lawyers for you that states after an accident they will get what you are in titled to, that really gets to me.
LIFE CHANGES Before all this I used to run at least twice a week plus races at the weekend also extra training when racing . I delivered a free newspaper, about 700 of them walked every where or biked. Some body once asked me when I would stop running I said when I don't enjoy it any more. I never thought the choice would be taken for me. I ran because I loved to run not for fitness or weight loss, just because I loved it so much. Over night all this was taken away it has bean so hard to come to terms with, honestly I don't think I have still. The sudden deaths of both my parents only eight weeks apart Mum a few weeks before Christmas Dad a few weeks, after did not help the RSD only bean diagnosed a few weeks before. I have had a lot of things go wrong health wise, before RSD, but fought back to be a stronger person but this was very hard. I was told once I bounce back from most things but RSD has yet to be beaten. Be for RSD I took so much for granted like just getting up dashing to the shops I could pop to the shop near me and back be for the kettle boiled, not now. Some days
I am in too much pain to stay in and too much pain to go out. I still do most things my self like house work, cooking and gardening which I love, but I stop and take rests if I need to. Shopping is hard as it is very tiring where as before I would have walked into town and back I now use buses or my scooter..
To be continued...
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]
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]
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