1. < Brain & Nervous System
Profile picture for barbbie

The Pain in CRPS

Posted by barbbie @barbbie, Mar 24, 2019

@rsnowflake, @mam14,

One of the things I find the most annoying about this pain is its movement and varying intensities. Sometimes it doesn't stay very long in one place and it ups and moves elsewhere.To use a pain patch is tough because it can move so much. The intensities range from ache to very sharp. How would you describe your pain in location and intensity? I also have small fiber neuropathy, myofascial pain, DDD, raynauds, costa chondritis, and arthritis which are all pain producers so it may be hard for me to pick out what is what.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Profile picture for barbbielor
barbbielor | @barbbielor | Dec 5, 2024
In reply to @karel "I have had shingles for 6 years on my buttocks. Which left me with CRPS. It..." + (show)
Profile picture for karel @karel

I have had shingles for 6 years on my buttocks. Which left me with CRPS. It finally left in 2019. with some bouts of burning in legs, but that was it until now. I recently had to have 3 cervical epidurals for nerves pressing on my neck to my arm. Now the burning on my buttocks came back. No shingles, no redness, just hot.

I have found 2 things, that help Pennsaid Oil 2% . Its very expensive, insurance may cover it, if you do a prior authorization, and then Aloe Vera Gel, pure gel . Walmart sells it for $4.95 a 32 ounce bottle. It seems to
keep the burning away or calmed down right away but it returns . So you must keep on applying it.

I wish all who have CRPS pain free days.

Jump to this post

Thank you for your suggestions about burning pain. I have ad CRPS at least for 16 years. Mine started afer poor foot surgery and has spread from right foot to left foot and has moved up left leg to left buttock. I have recently been dx with lyphedema. I just read CRPS can cause lymphedema! Lyphedema treatment is pathetic! No one doctor deals with it a a whole. I have seen a vascular surgeon for my legs and an OT for my arms. I believe I have it on the right side of my face and so I have an appt with my ENT! My PT feels there is lymphedema at the base of my neck and right side of sacrum. I have no clue who will deal with those. Weight gain is erratic. I use a pump on my legs two times a day for an hour each time. I recently bought an Ellipse to help with circulation. I have been waiting for two years to get my power chair replaced. My current chair is 7 years old and in need of help. Looking at finally getting info to Medicare after Workers Comp denied it. Such a mess and so time consuming. Thankfully Medicare does provide power chairs for people having CRPS.

REPLY
Profile picture for BeBold
BeBold | @bebold | Mar 5 11:38am

I'm supposed to be able to post this again. Having trouble.

TONIGHT. 7PM. March 5th.

Philip Getson, D.O., one of the few serious CRPS specialists in the US, maybe anywhere, will be live on facebook and youtube tonight, Wednesday, March 5, 2025 at 7PM Eastern. More info:
https://rsds.org/event/dr-getson-march-2025/
Sorry for the late notice. Its just now I thought to post it in this forum.

REPLY
Profile picture for ligol
ligol | @ligol | Nov 21 7:04pm
In reply to @rsnowflake "I would say the pain is not possible to describe. I do mine on a scale..." + (show)
Profile picture for rsnowflake @rsnowflake

I would say the pain is not possible to describe. I do mine on a scale of 1to 10. But the pain itself could be burning, tingling, or stabbing. I write every thing down every day . I write down the weather, how much stress I have any changes in my health. This disorder sucks. No one person I've spoken to on this forum seems to say the same thing. So I only can pass on what mine is like. I also have several other health issues. So I just go day to day. And try to find a good day and do something special for myself...I'd suggest you try the same. Keep talking and best wishes.

Jump to this post

@rsnowflake

REPLY
Profile picture for ligol
ligol | @ligol | Nov 21 7:05pm

Why you got this CRPS disorder in the first place? Thank You

REPLY
View MoreView Less
Please sign in or register to post a reply.