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.
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.
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.
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.
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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