Oh dear - I am just in so much pain that I don't know where to go. I thought I would just post here and vent a bit.
I have full body RSD and fibro. Now it is also in my TMJ and it is so painful. I can only eat soft food which I have been doing for awhile anyway. Also, I continue to have burning pain in my mouth, gums, tongue from swallowing chloral hydrate(for sleep) months ago. My gums are still bright red, blistered and swollen. I can only use sponge swabs to clean my teeth. It is awful for my dental hygiene.
Then I passed out and fell and triggered off fibro or RSD in my mid back and spreads up to my shoulders and neck. I can't even bend over to open a drawer. Aches all the time especially if I turn even a little bit.
Pain is in knees, ankles, jaw joint, hands. You name it and it is there.
NO meds have helped -nor supplements. On the wait list for in patient ketamine ( a year wait) at a major hospital.
Does anyone have any suggestions for pain relief except sleep? I am so desperate. This is "jump off the bridge pain" everywhere. Very depressed. Try to go out and smile but in agony. Hope I can make it each day. A dr. offered free HBOT - but it scares me. Most things make me worse. Disabled from epidural 4 yrs.ago. More disabled now from fall.
Desperate day - thanks for reading this. It is therapy for me.
Sydney

Just sending you some hugs

You are in my thoughts and prayers. I know exactly what you are going through. My RSD is nearly full body now, too. The mouth thing is hard... tongue always feels frostbitten, lips burn, everything just HURTS! Even talking hurts. I know what you are going through-- and nothing seems to help.

((pain free hugs))

Thanks for your kind response. I appreciate the support you send.
I forgot to mention that my face is also bright red and my ears are often red. Does that happen to anyone else? It especially happens when I am in a full body flare. However, my left ear is often red. When I saw the top RSD Dr. he immediately asked his 7 residents what it was and they all answered. It is part of the RSD condition. I can' t remember what they called it. He diagnosed me with full body RSD. Noticed all things about my body without touching me.
Oh - must stop typing - hands are aching.
Sydney

Oh- yes! I always get a flushed face and red ears esp. during a flare up! This happened to me before RSD but happens more now that the RSD is in my face.


Does heat help at all? What about a warm epsom salt bath? Have you tried different laying positions (sometimes that helps me)?

Hi Sydney,

You describe multiple diagnoses and signs and symptoms not usually associated with RSD, so on top of my fervent wish that it would just go away and leave you alone, I have some major concerns about your trying HBOT right now.

I consider myself the resident expert on HBO and RSD, and have worked very hard at understanding how HBO and the natural healing process combine to relieve symptoms of this disease. I believe I have come up with a protocol that would optimize the benefits of HBO, so if you decide to take your doc up on his offer I urge you to have him phone me (just PM me and I'll give you my phone number).

I have known RSD people who have gotten substantial relief from HBO and known people who came out much worse, and believe I understand why both things happen.

I believe you need to get a much better understanding about what is going on besides the RSD; especially the reason why you passed out twice. Falling is one thing; passing out is entirely different and needs to be investigated.

I am very concerned that you might try HBO without having your doc talk with me (I am, after all, a social worker, not a doctor), so I'll close with this:

DO NOT ACCEPT 100% OXYGEN AT ABOVE 1.5 ATMOSPHERES. I AM SURE THAT YOU WOULD COME OUT IN MORE PAIN AND WITH MORE PROBLEMS THAN YOU HAVE NOW.

I hope you will phone me so we can talk about this in more detail...I really do know what I'm talking about...Vic

((((((Sydney)))))),

It's too late for this tonight unless you've got someone to shop for you, but, you might want to pick up some relaxation tapes. They really do work.

The "Rainbow Butterfly" from Dr. Miller is absolutely unbelievable. I went to a chronic pain meeting where they played this tape. Whole roomful of smiling/relaxed people

In the meantime, turn your radio or your TV music to a classical music station. Lay down in a comfortable position in a quiet, darkened room and just listen to and feel the classical music. It's known for releasing the pain and the stress in the body.

Soft, gentle hugs.

Barb

Who typed this for you? Have an auto machine. Playing a bit of devil's advocate but I know what I am talking of. Is your pain such you go 3, 4 full days often unable to sleep. No amt of anesthetic keep you under ?

Surely you have entered the dystrophy stage then which muscles have died or are dying? That is third worst pain following RSD, self amputation-----
how often have you faced at least temp. blindness. Can you actually sit in a room with lights on, look at cptr screen? I sure can't--if morphine helps--yo sr not close to full bosy, it was #7 med when I quit all bc none did anything.
Docs allowed me to take more than allowable in the USA and on top of that, I took 60 vicodin trying to stop the pain, not hurt or kill myself. It only kept me awake for 6++ days.

If really full body or i internal organs which that implies also, would any doctor have you wait (ket is not going to help anyway if you are but..... they'd try)--------there is no known help, nothing for pain, scs is for beginners with rsd accdg to all leading docs I know in usa --yet know some who haveior say have rsd for long time, have had it spread and scs helps.
Docs say it can not---my thought is if you think it does--it does. Onlythink atthis point is distraction---I chase wasps trying to get stung, minor distractions----I use to call sex the best pain reliever but admit it in relity is by far the best pain distraction.Both m acls are torn in half, I rarely notice but when i fall down at the urinal. I n 30 rs, never asked wife, kid anyone to get me water or a coke----do it yourself be better off. sure two months ago, I crawled 17 days but still did all for myself---only thing I did not do was ge svl miles of walk in. My foot is in medical journals, has more harware than Lowes. My rt heel is 12--2" screws--broken my neck twice , 8 vert in back shldr 3 times, ?????sgys from football----tough it out or quit---your choice. I choose to live.---mh (hof athlete and named top biz owners In usa---before I retiredat 50 )------------no one else really does, so i have soent yrs trying to find my own cure---the 4-5 docs who know anything, are even close to knowing cause maybe-----sadlty do not share info. Hyperbaric was ruled out bymany in major clinical trials 10-15 yrs ago---yet pts are stg it each day and docs getting into it. why??---I suppose like Christian Bernarard and Debackey who shared no info past a point as both wanted to make first artificial heart--------while we suffer, sad but true.