My Myelogram was given in 1980. I reacted very badly and spent two weeks in bed with crushing headaches.
A few years later I awoke one morning and could hardly walk for pain in the feet. This lasted for about 8 weeks after which time I gradually improved to the point where I can walk a short distance, say 100 yds or so, when the pain will kick in to the point where I have to stop and rest. I also feel very ill - like flue. If I continue walking beyond this point I can ultimately reach a level of pain where I am literally speachless. At times, if stressed, I can catch fire completely and the whole upper body painfully burns. I have even found myself banging my head against the wall to take my mind off the burning pain.
To deal with this last sympton I have made-up an ice pack for the back. I have also read some books on CBT
After many specialists and many MRI scans it seemed I had Arachnoiditis (my GP had read Dr Sarah's paper and most of my symptons - muscle weakness, periods of foot drop, twitching, electric shocks, bladder problems etc, etc, matched).
I take Gabapentin, Co-proximal (now switching to Co-Dydramol), Lofepramine, Lactulose, Tamsulosin, Coracten, Bendroflumethiazide and Omeprazole. I rattle quite loudly when moving around.
Where I seem to be different to other sufferers - if I have read other sufferers stories correctly - is that I suffer little discomfort/pain when laying down.
This has a twofold impact. When at rest I feel guilty at not doing more. When I try to walk say, around John Lewis, I am overcome with symptons and wish I had not made the effort. I make bad purchasing decisions and invariable have to return items for exchange later.
I have a collapsible scooter for 'long' distances and to get to the local shops, if I don't wish to take the car. But a scooter is not always convenient and getting it into the car is not easy even with my wife's help. I have therefore for sometime been considering a wheelchair but fight with the psychological barriers of making such a decision. Is this defeatist? Will I stop making the effort to walk and get even weaker as a result? What will people think - will I be thought a fraud when I get up and walk into the shop say? Stupid maybe I know but that's the way I feel.
I would love to hear of any similar struggles and how folk have come to terms with such a decision.
Do other sufferers get relief when resting? I seem to get the impression that most, if not all, suffer continuous unremitting pain.
Hope I have not bored with this longer than intended post.
David