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...
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