Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-06-2007, 02:29 PM #1
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Default RSD pain in the lower left hip area.

I know none of you that I have noticed deal with the RSD in the pelvic area. Mine actually is on the left side on the outside near my hip bone.

I found some info on it in Dr. Hooshmand's book but not a lot.

Anyway, I cannot wear jeans nor pants. Last night I put on a loose pair of pajamas and had to get out of them and put on a pair of pajama shorts that are about 2 sizes to big. I wear dresses and skirts a lot. Can you imagine someone wearing a skirt or dress in the wintertime. I know people wonder about it when they see me. I explain if they ask.

I have not seen anyone on here that deals with this but me. That's why I don't get any answers usually when I post about it. I'm just thinking one of these days someone is going to come on here that can relate. I hope not but they might.

The surgery worked wonders for my constipation problems. He removed a lot of scar tissue.

What I am wondering if any of you have ran up on any information about RSD in the pelvic area. I get the referred pain down my legs if I stand on them too long and I am also experiencing burning on the bottom of my feet now. Is this part of the RSD? Have any ideals?

Thanks,
Ada
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Old 01-07-2007, 03:03 AM #2
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Default Hi Ada

One thing I know is that a RSD'r friend of mine had GI surgery and ended up with severe abdominal pain and bloating to the point of looking 9 mos pregnant along with severe unrelenting abdominal.

After several years of suffering, the docs finally came up with the idea of a a sympathectomy but first they were to try a splanchic block - well that worked very well for her. This block is used for abdominal (visceral) pain.

You might want to do some research about this type of block and ask your doctor about it.
It was done in her thoracic or lumbar area and lasted for weeks.

It's done in the spine like a block but is done for the splanchic nerves which are all over the abdominal cavity.

It's worth asking the doctor about since you said the 3 blocks you did have worked so well. It may be your only chance for relief.

http://www.ipcaz.org/pages/print/pro...dio_print.html
Look under "Am I a candidate for Radiofrequency...",
there is a bullet point explaining splanchic nerve blocks for abdominal pain.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
www.womenshealthapta.org/csm06/11344.pdf is a site that mentions
splanchic nerve blocks for pelvic pain in women--the following info in almost all the way to the bottom of the article. It is on page 10 under #57 Nerve Blocks

(Types of) Nerve Blocks
�� Pudendal
�� S3 nerve root
�� S4 nerve root
�� Superior hypogastric plexus
�� Celiac plexus
�� Splanchic nerve

I didn't put them all in there.

May you have peace, love and joy in your heart,
Hope

Hmmmmm I can't seem to get these links to work. Let me work on it

Last edited by HopeLivesHere; 01-07-2007 at 03:12 AM.
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Old 01-07-2007, 05:59 AM #3
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Default

I have it in my right hip and I have to do the same thing, I found though that if I wear cotton loose pants when I have to go out it's not as bad. I can't wear jeans at all ... They hurt so badly.
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Old 01-07-2007, 06:21 PM #4
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Mine is full body including both hips. I am sooooo thankful I don't have and didn't start with touch sensitivity. The only time it's like that for me is when my pain is high. I always wear soft loose pants, danceskins. They're wonderful! I try to lay on the couch really still and cover up. I noticed if I'm hurting that cuddling in some soft covers helps to ease the pain down.

Karen
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Old 01-07-2007, 07:09 PM #5
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Frown hello

I have lower abdominal pain and hip sensitivity too and I have a hard time with underwear (when pulling up or down) my hips burn with an echo of their motion that stays for a while.
I like to wear the softest pants with preferably no outside seams.. same with the undies no outside seams and ladies boxer cut is most comfy for me.

Sooo.. this is a sensitive topic but I also burn between ..
As for the feet burning Ada that could be referred pain, or pressure from the inflamation above in the torso. Keep track of all symptoms and report them to your doc asap if they get any worse.

I hope you are feeling better soon.. hey mabie we can make RSD wear.. hmm

Take care soft hugs,
sandra
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Old 01-07-2007, 07:27 PM #6
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Hi Ada and Sandra,

I don't have any pain in hips, but I also have burning "down there". No one can tell me why.

Also, I have had burning feet since '02. No one knows why. I have never been sent to a Neurologist. I went off Flexerill due to bad side effects to my heart. Had been on it years and years. When I did, my feet stopped burning so badly. I read that Flexerill can cause peripheal neuropathy. But eventually the burning came back. So I don't know what it is.

Ada, did anyone tell you why you burn in that area that we won't mention?!

(((hugs)))

DeniseG
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Old 01-07-2007, 07:29 PM #7
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Default OOOps!

Sandra,

My last question should have been to you. I got you guys mixed up. Sorry!

Just sign me,

Lyrica fog lady.

DeniseG
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Old 01-08-2007, 08:07 AM #8
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Talking low hip pain

hi ada.i have rsd in my whole left side including hip & pelvic area.i can wear like leggings although it's aggravating at times.
i don't know,it's all just part of this lovely rsd-lol!
i get the shooting pains in my l leg/foot & hip.have to walk with a cane.
don't know how much help iv'e been.
debbie
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Old 01-08-2007, 01:36 PM #9
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I don't have RSD, but I do have pain issues and jeans and many other pants are so uncomfortable and painful for me...

At home, I wear soft pajama pants all the time... for a long time I would just suffer in jeans when I left the house because I couldn't find anything else that was comfortable and acceptable to wear for going out.

Then I went out and bought a bunch of wind pants... the nylon kind that make noise when you walk. I found several kinds in the "work-out" area of the local clothing store, and I bought several that had the soft-cotton inner liner and a drawstring/elastic waist.... because tight elastic bothers me, I bought the pants in a size XL (I normally wear a Small).

They are big on me, but that is what makes them comfortable enough to wear, and because of the drawstring on the waist I am able to wear huge pants without having them fall down. I tie the drawstring and then I fold the waistband over a few times so that the soft cotton liner is toughing my waist instead of the elastic.

My other "go out" pants are all nurses scrub pants. I went online and found several types of scrub pants that are nice enough to wear when I go out. Again, I made sure to buy ones that had a drawstring waist and again I bought them in a larger size than I needed because that gives me extra room and less rubbing of the fabric on my skin - and it also make me able to roll the waistband so that it is more comfortable.

I have several 'scrub' pants that are so nice that they look like khakis or those nice black pants that are slightly dressy. They are nice eough that I can wear them to dinner at nice restaurants - but they are so comfortable because they are made of a softer cotton that normal pants.... plus, they are very easy to wash and wear (no ironing needed, no special washing or drying instructions).
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Old 01-08-2007, 02:06 PM #10
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Thanks Girls,
I was surprised to see several of you that deal with this issue.

Denise, I have had every test going. I have a Urologist, Gynocologist, Neuroligist, and several other Drs. and none can explain it. I have had test for every disease going. I honestly wanted to illimanate that ideal. I have none.

The pain is very bad on that one bone in the pelvic area and I believe the burning pain as someone said is referred pain.

I am going to call my Anesteologist and see what blocks he does for the pelvic pain. I have had this for over 3 years. It has settled down in all areas except that one area on the outside.

I sometimes think it's part of the RSD or Fibro but I have no ideal for sure.

Thanks for the websites Hope. I also have gotten triggerpoint injections in the left hip area and they help for awhile. I am going to ask for more.

I have thought about a block. I hate being put to sleep for all of these blocks. I think being put to sleep so many times is hard on people also.

Thanks for the ideal on the pants also. I wear a lot of sweats around the house but I hate going out in them, I have a lot of stretch pants but even those can hurt when you sit down and they touch the left side.

Have any of you talked to your Dr. about what is going on in the pelvic area. I have asked so many times the Drs. just shake their heads now. They have no ideal. I do have my IC in control through medications so on the inside I am much better.

Thanks again for answering me. I was beginning to wonder if I was the only one in the country with this problem. Sorry that so many are but it makes me think it is related to the RSD or Fibro.

Ada
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