A Tarlov Cyst and CRPS Story

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I have had multiple injuries and surgeries that initially kicked off Complex Regional Pain Syndrome in my legs and hands - I was treated for CRPS by a Neurologist/Anaethetist using Catapres TT (Clonidine) though it took 8 years for CRPS to be diagnosed. I had an extreme reaction to this drug, however, it did reduce the symptoms dramatically. Whilst investigating CRPS and the other weird symptoms I had, an MRI of my whole brain, spinal column was carried out as it was suspected that I may have Multiple Sclerosis. The MRI did not show MS but did show a juicy sized Tarlov Cyst at S2! This explained some of the random nerve pains and sensations that not one Doctor could figure out! these symptoms differed from the CRPS symptoms - the CRPS symptoms involved swelling, burning red patches, blotchy patches, a feeling of water pouring down inside my legs.

Though there is a lot of ignorance out there in the medical world surrounding TC's and most Dr's/Radiologists/Neurologists don't think that TC's have symptoms and almost infer that the symptoms are psychosomatic!! When first diagnosed with CRPS it was also apparent that a lot of Dr's didn't take it seriously but I see nowadays that is not the case. For those of you who read this that have CRPS, I recommend that you read the book Explain Pain by NOIgroup.com, its fantastic, I also used their Recognise apps on my iPad to retrain my brain to recognise my injured hand and both legs. Mirror box therapy also helped a great deal - it was a weird feeling for my brain to be fooled into thinking that the reflection of my right hand in the mirror was actually my left hand and feeling the sensation of nerve connection again was indescribable.

I since found a Dr who is traditionally trained but also is holistically trained and we have used a traditional medicated approach alongside holistic approaches including genetic testing, supplementation with various supplements in response to test results from an Organic Acids test. This has been successful but I do find that stress also can affect my TC and mild CRPS symptoms still rear itself occasionally. I recently had a fall off my horse and it certainly stirred up the TC for a few weeks - regular visits to a chiropractor and manipulative physiotherapist helped to get the symptoms back under control. I will not take Gabapentin or any hard drugs/pain meds unless I have no other choice - the side effects are very off putting to me. I take a lot of Magnesium citrate, malate, glycinate and chelated magnesium and have found this to be beneficial.

I have also found that eating a lower carb, moderate fat and high protein diet along with quitting alcohol has reduced inflammation dramatically and the CRPS/TC symptoms have reduced a little. I keep myself fit and supple which also puts less strain on the spinal column so exercise definitely helps my symptoms though I understand that other sufferers may experience something much worse and debilitating than I have.

It would be good for sufferers to share experiences.