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cemile

Trying to relieve tail bone pain

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Hi all. Looking for a bit of advice. Because of the SSC itself and associated weight loss, I have significant pain in my tail bone and sits bones when I sit (which is 24/7). At night, I sleep in an electronically-controlled reclining chair, which I keep pretty upright due to severe GERD. The problem is, no matter what sort of soft pillow/cushion I put under me to help the tail bone pain, it seems to shift when the chair tilts back or the legs come up, which causes it to painfully bunch under my tail bone. Since I am pretty stiff and immobile, it means I am woken up in pain every 20-30 minutes and have to shift position, which sometimes marginally helps. I haven't slept through the night in ages, despite taking sleeping meds, pain meds and muscle relaxants before bed, and I'm exhausted! Any suggestions for dealing with the problem? Would really appreciate it.

 

Thanks,

cemile

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Hi Cemile,

 

Have you thought of contacting a wheelchair company? They'll have a wide variety of cushions available that will not only stay put better, but also will reduce the pressure on your tender spots. You might even be able to get your doctor to write you a prescription for the cushion you decide on and have your medical insurance pay for part or all of it.

 

In the meantime, I've found a single layer of the coarsest tulle netting or window screening put between a cushion and a chair helps prevent the sliding. You might try that and see if it works for you.

 

Warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Cemile,

 

I don't recall if I'm properly welcomed you with a nice big warm hug, or not. If not, Welcome to Sclero Forums, Cemile!

 

I'm sorry you have scleroderma and so many issues caused by it. Although I'm not a doctor (no medical training at all, not even a current first aid certificate), it would seem to me to be vitally important to your well-being to be certain your Coccyxdynia is well-treated.

 

Now that you know the official name for it, ask your doctor for a referral to a pain management specialist who handles coccyxdynia. Usually they will inject the area with a local anethestic to give you some blessed relief, but they should work with you until you find all the methods that are necessary to relieve the pain and help you get a bit better night's sleep. Don't delay; you deserve more comfort and a better night's sleep, too!!

 

Just for a temporary fix, if you sew or know someone who does, perhaps you could insert some padding into your underwear, so that it would stay with you rather than shift with the chair. Maybe even some soft gel packs?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I am sorry to hear the problems you are having.

 

Are you able to get a ring cushion? It` shaped like half a doughnut, with the center cut out.

 

I hope you soon get relief


Take care.

Lynne

 

A trouble shared is halved, a joy shared is doubled

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Thanks all for your suggestions. I am not sure if I can tie anything to the chair in such a way that it would not move. I have already tried the doughnut and u-shaped cushions, which unfortunately did not help. i am thinking of trying some of those "bubble butt" silicone undies, but don't know how well they'd stay put, as I have no real butt left to speak of to hold them in place :( In any case, thanks again and keep the ideas rolling if you think of anything else. As always, much appreciated.

 

cemile

 

p.s. By the way, a friend gave me some soothing muscle lotion with mint and geranium. Kind of pricey, but it gives a nice tingle and some relief to sore/tender/sensitive skin.

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Get a child's blowup swim ring (donut shaped) and put it under something soft like a blanket. Keep your tailbone in the hole of the ring. I have suffered from tailbone pain for years although I am brand new to scleroderma just being diagnosed this week.

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