Hallo - I have had arachnoiditis since early 1991 because of the failure to diagnose and treat spinal fractures and a brain injury. I eventually got my diagnosis from the UK Social Security dept. After a horrendous first few years, I learned how best to keep this condition under control (exercise, rest when necessary) and never see a doctor because of what they did to stop me getting treatment and financial compensation.
Lately I am not well, I clearly have a flareup in symptoms but it is very bad, is affecting most of my body, and I am in a lot of pain. Still trying to exercise but I'm not at all well. Having found your forum, I wonder if any fellow sufferers know if arachnoiditis can become adhesive after so many years? My symptoms are pretty bad - breathing difficulties, hard to use bowel function, extreme exhaustion, dreadful pain in my spine and in my legs and arms (more, I don't want to dwell on it) - in fact I haven't been this bad for years. I also have a lot of long-term stress in my life, could this have caused such a major flareup of symptoms?
I was diagnosed in 1991, but I got arachnoiditis because I was given two myelograms in 1971-71 despite having a known allergy to iodine, so I sympathise with your feelings about doctors! Two things revolutionised my life: chiropractic treatment and green-lipped mussel food supplement. The chiropractic has made a huge difference because it actually makes me feel better. It took quite a few months of weekly treatment, but now I just go when I have a flare-up or if I hurt myself somehow. I've got Crohn's disease as well so I can't take much in the way of non-steroidal anti-inflammatory drugs, but my tummy is quite happy with green-lipped mussel and it makes a huge difference to how stiff I am. You may not notice a difference after you've been taking it for a few weeks, but I bet if you then stop, you'll feel the difference within a few days! Another thing which really helps with pain control is amitriptyline. I can only take 50mg a night because more than that makes my arms jerk lots, but it's very good for the burning pain in legs and feet. And baclofen is brilliant for the muscle spasms, I sleep much better now. I always find if I can sleep at night, the day is never so bad. Lastly, I use a lot of distraction. Music is brilliant, books and good, writing, computer games. I'm lucky enough to be quite well so I'm actually working just now - yep, somebody gave me a job, even after 3 years ill and another year applying for jobs! It's also really important to have a supportive GP. I find nowadays I'm not having to explain what arachnoiditis is, and quite a few doctors even get why arachnoiditis and Crohn's is a crap combination! Keep smiling sister, it WILL get better.
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