20 Apr



For those who followed me for a long time you know of most or all of my illnesses or medical issues besides Lyme. I have been living with RSD for maybe 10-15 years now. If you are unfamiliar with RSD/CRPS then click the link on the bold text in this sentence to go to a page that explains it better. Basically it is one of the worst pains that is severe and can be on part or the whole body. I describe it as being burnt in a fire and your skin is very sensitive to touch and feels like a burn wound. It’s a nerve pain that no pain meds can touch unlike my other muscle, joint, nerve, arthritis and chronic pain. 

I had my IVIG last Wednesday and when the doctor stuck the needle in my left arm it hurt so bad I teared up. It felt the the needle was heated up unti it was hot metal and then inserted into my vein (which spasmed and collapsed). I said “ouch that hurts bad and I usually don’t feel the needles”, my nurse looked at me funny. So we ended up putting the IV in my right arm. 

Later that night the severe burning came back which is different than my usual daily pain from head to toe. That’s when I knew my RSD was back to being severe again. It had eased up after my discs in my neck (c-spine) had ruptured leaving my arms numb and tingling for years. The neuropathy in my arms helped relieve the RSD pain which is weird because nothing seems to relieve RSD pain. My pain started to be severe it seems after surgery on my left knee. The RSD pain is only on my left side of my body and starts at the top of my shoulder down to the calf muscle on my left leg. 

The pain is very intense, nagging, radiating, burning, non-stop and nothing can touch your skin or it’s worse. Even my shirt and pajama bottoms (I wear daily) hurt the skin. My flannel soft sheets hurt the skin and even an Egyptian cotton sheet hurt the skin. Those with RSD are very uncomfortable and it is said to be the “worst pain in the world” amd they say many with RSD end up taking their own life and can’t deal with the pain. 

I was hoping to get ketamine nasal spray to try but my doctor would not give it to me. I am still waiting to be approved for the ketamine infusions since I’ve already had one lower dose infusion that seemed to help some. I can tell the difference is my chronic severe pains versus the RSD pain because of the burning feeling as if you are literally on fire. You would think ice would help but no way!!! Ice made it hurt a lot worse. 


One Response to “My RSD/CRPS ”

  1. Zilla of the Resistance April 20, 2015 at 3:44 am #

    I am so sorry for your pain, but I do thank you for sharing your experience & for posting info about RSD/CRPS, which I was diagnosed with 15 years ago after a factory accident injury to my right (dominant) hand/wrist refused to get better even though it should have. Over the years a lot doctors told me that I have it & it spread, or that I don’t have it & am crazy, and then eventually I learned that my many acute Lyme infections that were not appropriately treated when they should have been over the years gave me the chronic Lyme & co-infections, and then I developed adrenal insufficiency (the thing most likely to cause me to suffer sudden death), and my RSD has not really come up much with the doctors I see now, but I still suffer from weird unrelenting pain that’s different from my ticksick & AI pain when it flares, and my right hand is still largely useless and I drop things ALL THE TIME which frustrates me to no end.

    I’m sorry that you have to struggle to get adequate pain medication. I hate how pain patients are treated so cruelly by doctors due to their (the Dr.s )fear and biases. May less painful days find their way to you soon and may we live to see common sense and compassion return to the medical profession.

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