Hello everyone! I hope I am doing this the correct way. Please forgive me for I don't even know where to start. I am here regarding my daughter which by my avatar is her.. anyway I guess I will just start small and see if anyone responds. My daughter "Mirinda" is now 18yrs old but has no life, she is in chronic severe pain now Every Single Day! There are some things that are diagnosed: Life long Kidney disease: which causes her to pass countless kidney stones and is causing her kidneys to calcify "Nephrocalcinosis". 1 surgery age 12.
Endometriosis: 1 surgery when she was 16 and her doctor says we are trying to make sure she has the "choice" to have children when she is ready. We are trying to make sure it doesn't turn into some kind of cancer and also trying to keep her from having early hysterectomy. I had Endometriosis that was called severe, acute and chronic at age 15, was told I would never get preg. and had hysterectomy age 32.
Scoliosis, lumbar hyperlordosis, lower spine rotating, severe leg pain since age 3 and now it's in both legs, arms, wrist, shoulders etc..... She is on a multitude of medications and some are pain meds.
I have Lupus causing a multitude of problems: vasculitis of central nervous system etc. but she has not tested positive for this. I know this is long and I tried very hard to keep it short and sweet but we need HELP! Mirinda goes through spells where she walks with a walker and or cane and she is there now! She should be in college but instead .... well you see where we are. Any help or thoughts would be forever appreciated.
clarity

Welcome to NT

You really don't need to apologize here for being long or short, we understand. Don't have all the answers but tons of support. If you read some of my posts... well most of them, they're long.

Sounds like you and your daughter have been through the mill. So sorry for your troubles. It takes it toll on you.

My physical therapist says she can do myofascial massage (painful) for endometriosis and may help with getting pregnant. May check in your area for a PT who says they can do that.

Kidneys are a specialty area of medicine. I don't know too much about that. Maybe someone will come along with more info for you on Kidneys.

Chronic pain is all too familiar to me. I'm doing much better this year but I lived through 7 years of hell and still recoverikng from a 2000 MVA. I have tried and searched out a lot of things. I've had a lot of good therapy, 8 years of PT-not always rough therapy but have really been put through the PT mill too.

Of late, found a nautropathic healer - she has left town - that had a new twist on things and different things to try. Expensive though but I do think the short time I went to her has helped, and give me new hope for me and others. I met an embro stem cell recepient there. She went to India for two months - $40,000. She was amazing. She was involved in a motorcycle accident, couldn't walk. after treatment she's walking now and doing better in every way. She needs to go back - $20,000 more. Just another option to think about.

Back pain is miserable pain. PT may help. Aqua therapy, exercise to tolerance, yoga, stretches, oversized tennis balls -Wal-Mart and the Miracle Ball set http://www.elderluxe.com/store/item....FVRc2godR09dLg and a theracane helped me too http://www.nextag.com/thera-cane/stores-html pillows, spinal alignment board. http://www.amazon.com/Back-Magic/dp/...2418462&sr=8-1 - just Googled that to show you-a little high, I think.

Recently I've been using LED and infrared light therapy pads that helped me tremendously. I believe in them enough to try to start a business with them but don't have the time and health to jump into a new business. I can distribute those if you're interested in them. This is my upline - haven't made a web page yet for myself but these are what helped me - http://healthlightz.com/

I also found Keniso tape that helped with my ADLs and pain. My PT done that too. I can tape myself in most areas, but not on my back side. I'm going to be working on some detailed info for the tapings I use. Look for it to come up on the forum. Will take me some time but a member has asked me to draw or somehow show her how I'm using the tape for my TOS and other areas. Glad to do it just working on how to show it. I seen a good post here but couldn't find it to give you the link. Showed a lot of tapings. If someone reads this and can find that for you, please do that for us.

A good doctor may be able to give her to right meds to help her but drugs are hard on kidneys. I'm sure you both know that. There are other things to try so don't dispair.

I can say that my pain pattern has changed for the better. I thank God for that. 24/7 pain is not a good thing to live in. I really don't like to even think about that and will say "I'd rather have not lived to experience those seven years even if it means my time on earth was up yesterday." Sad...

It's good you've got each other. My prayers are with you and your daughter.

There's a lot of info to research here. If you need to know how to get around, just ask.

Here are a few links for you to start with.

Chronic pain:

http://neurotalk.psychcentral.com/forum10.html


back:

http://neurotalk.psychcentral.com/forum22.html

Hang in there...

Last year my niece had a fusion because her scoliosis with rotation was progressing so quickly and as at the severe %. 9 levels if I recall correctly.

Did they give you numbers or % on the curve & rotation and is it being checked regularly to keep track of the progression?

I assume there have been MRI's?
they don't show any spinal cause for the leg pain or the arm, wrist etc?

If not it could be soft tissue related, myofascial restrictions- those can be treated with massage and stretching, she could be having muscle spasms or trigger points also.

I agree with (Broken Wings) too about seeking out good a nautropath/ healer that might help to get the body back into a more healthy state.

our Vitamins, Nutrients, Herbs and Supplements forum - MrsD & others might have some good ideas on supplements/vitamins that can be beneficial
http://neurotalk.psychcentral.com/forum49.html

(Broken Wings) Thanks again! You are full of information and information that might, just maybe help Mirinda. I am so new here so a lot of your abbreviations are lost on me but I will soon figure them out. MVA-motor vehicle accident? I am awful sorry to hear you have suffered for so long, my heart goes out to you...truly! LED and infrared light therapy pads??? This one I have never heard of? We have tried a lot of different things though and we always come up short. Also never heard of Myofascial massage? Lots to think about and more appreciated than you could ever know. I will look into the things you mentioned that we have not tried yet. You know when your in chronic pain for years you will try almost anything! I look forward to learning more about you and the others here and you just have no idea how alone I've been...can't say thanks enough!
clarity28







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Jo*mar- Hi there! So nice to meet you and so grateful you responded to my very long introduction.
Wow.... I am sorry for your niece but is she doing well? Has the surgery actually helped her? My prayers are definetly with the both of you.
No. No one has given us numbers or degrees of curvature...EVER! This is something that was found my gosh back when she was 11 or 12? The poor kid has just been passed around like an old football! She has seen a number of doctors regarding this issue....oh and let me make this perfectly clear "we have been sent to countless doctors" and they all have different opinions! One doc. says it is mild and the next says that is not mild and she should have been braced years ago! All I can say for sure is what I see on xrays and mri is narly looking! It sounds like your niece was in pretty bad shape..thing is Mirinda's body is not noticeably twisted to most. I see it though, I see it in her clothes the seams on her jeans twist to the front of her legs, her shoes are warped etc. and when she is undressed standing there I just see it...ya know what I mean? I dunno anymore all I know is she is in agony and just cannot sit for long. Did your niece have that problem? Sooooo we have been sent to yet another doc. set for Oct. 22nd and I am just holding my breath! One MRI and with out contrast which irritated me, they are soo expensive and so what do ya wanna bet she will have another so it will have the contrast?? I swear we have put a couple of doc. kids through college!! I bet there are tons of people here who have! You know what stinks is you would give every thing you owned and your life indeed if someone would actually help. Have tried a lot of the things you both have mentioned but there are some I have never heard of and I'm willing to try!
Thank you soooo very much for responding!! I really do feel alone in this mess except for God.
Praying for you and your lovely niece
clarity28