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Please help me....Please??? - 9/28/2010 12:55:22 AM   
Lizbetbathory


Posts: 158
Joined: 1/1/2006
Status: offline 		I am disabled..I have Ehlers-Danlos Syndrome ( eds) type 4 vascular. The connective tissue in my body is too stretchy, think of a conortionist or double jointed ( double jointed is a misnomer) . I have about 10 % movement in my left arm from a surgical fusion  ( screws and plates and bone graft are used , they file away part of the joint put in the bone graft then the plates then the screws) my right is almost completely dislocated and I will most likely have to have that one fused as well . (on a side note I broke a screw a while back and it is loose... I have a screw loose for real) :D..... on to the more serious thing. What i have causes almost every joint in my body to easily dislocate, as I am typing I have a dislocated patella( knee cap) I will eventually die from this.  Imagine living in constant pain, 10% movement spasms in the whole arm and the fear of the right one dislocating.I had a doc in St louis where I live part time but I had to drop him for 2 reasons the first one being he told an ER doc to send me home with a dislocated shoulder. the second and less important is i live mostly in KY. I am out of hope I am out of options and I dont know what to do any more. The doc in my town says I am just wanting drugs, I dont I dislike feeling woozy I dont like spending a fuck ton of money He says I do it for the the sedation drugs.... If anyone has ever had surgery and had propolphol then you know it burns like a bitch. I had my knee dislocate sideways a few weeks ago, my guy who usually helps me get that back in wasnt here and i couldnt do it my self so I went to the er... as I was talking to the doc I sneezed. He WATCHED my shoulder dislocate. and felt it since he was listening to my lungs. apparntly that is sooooo NORMAL!   . I get vicuprophen from my pain management doc but I sometimes run out since I have to see him in person and live 7 hours away now. Then my life sucks. Being awake for more than 40 hours like I am now because of pain. I need help I need to figure out how to get a doc who will treat me. I want to find others with EDS too.....If you look at my Profile you'll see the xray of my weird shoulder :) it looks like a steampunk fixed my arm!

Thanks all


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RE: Please help me....Please??? - 9/28/2010 3:11:13 AM   
Rule


Posts: 10479
Joined: 12/5/2005
Status: offline 		Sorry, I cannot help you much.

Do you have ortheses to help prevent dislocation?

You might consider taking daily vitamin C tablets, but I have little hope that it will alleviate your condition. But perhaps a tiny bit... Any bit helps of course.

Pain? I googled this:

quote:

pain relieving herbal allies include skullcap, cannabis, valerian, turmeric, poppy, willow bark, St. John's wort, angelica, motherwort, black cohosh, wild yam, lavender, cayenne, kava kava, and rose. Essential oils of pine, lavender, peppermint, cinnamon, rose, clove, frankincense, rosemary, ginger, juniper, and birch also are used traditionally as pain relievers and are well-documented analgesic agents. Put 10-12 drops of any one of these essential oils in one ounce of a carrier oil such as olive or coconut. Shake well and then rub into painful, swollen joints to allay pain and inflammation.

If you suffer from chronic pain, try drinking four to six cups of skullcap infusions daily, or take 10-15 drops of skullcap tincture four to six times daily.


If you want to have progeny, then if your EDS is dominant, you might donate eggs and have the embryos tested and the good one(s) brought to fruition by a host mother. If recessive, the child will be a carrier, but in the next generation also may have embryo's tested.

Live well. Try to have a positive effect on your relatives, community and the world population in general; also spiritually.

Die well. And when you get to the other side, tell the Divine that I ask for you to get a free pass.

Best wishes.

(in reply to Lizbetbathory)
Profile   Post #: 2
RE: Please help me....Please??? - 9/28/2010 6:13:30 AM   
Termyn8or


Posts: 18681
Joined: 11/12/2005
Status: offline 		Your plight is indeed a serious one. I do not have all the answers but I did some quick research on your condition and learned a few things. The difference between me and others is that I think, I do not memorize or recite.

I have to be somewhere soon, and can give more detail later, but I have come up with something that may help. I can't make any promises, and to be blunt (which is my middle name) do not expect miracles.

I don't know how your finances are, but there are two things that, if I had your condition I would absolutely inundate my body with. Shark cartilage and vitamin C. Now this is just a quickie, I haven't gone to overseas sources as of yet. Later I'll have a chance to do so and maybe have more to offer. But for now that is what I would be looking into. Mass quantities, as much as you can afford of the cartilage. Perhaps ten times the RDA of vitamin C.

I'll do  bit more detailed (worldwide) research a bit later and see if I can come up with more, but for now that's what I would do.

T

(in reply to Lizbetbathory)
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RE: Please help me....Please??? - 9/28/2010 7:11:27 AM   
angelikaJ


Posts: 8641
Joined: 6/22/2007
Status: offline 		Hi, so sorry to hear... .

You did say you wanted to find others with EDS. I found a few for you (some more active than others, but you can still try connecting with people whether a blog is very active or not):

http://www.ednf.org/index.php?option=com_frontpage&Itemid=1

http://danielledaviseds.blogspot.com/2009/05/new-beginning.html

http://community.livejournal.com/ehlersdanlos/

Warmly,
aJ

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(in reply to Lizbetbathory)
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RE: Please help me....Please??? - 9/28/2010 2:57:01 PM   
Termyn8or


Posts: 18681
Joined: 11/12/2005
Status: offline 		Ok, I found a few things in my mineral database. This is not a load of crap, it is documented and footnoted and I can send you a copy if you like. Many diseases are related to mineral deficiencies, however that doesn't hecessarily mean you are not getting enough - for the average person. Some are born with traits in their body chemistry that prevents them from properly absorbing and utilizing those minerals. In those cases the intake must be increased drastically or possibly taken by injection. Some of these minerals also become toxic at certain levels, but if not metabolized, those levels are of course higher. By far the safest way is via food, and it's at least worth a try first. It's also important to realize that the soil in which it is grown is important. The minerals that can have a significant effect on your condition are as follows, with dietary sources..

Copper;
Beef liver, peanuts, walnuts, sesame seeds and almonds.

Silicon;
Wheat, oats, rice, lettuce, cucumbers,avocado and strawberries.

Sulfur;
Mustard, eggs, seafood, beans, nuts and meat.

Vanadium;
Vegetables, especially root vegetables, nuts, parsley, fish, radishes, dill, lettuce and strawberries.

Now there are a few caveats involved. First of all whenever possible you want these things to be processed as little as possible. Also the grocery store may not be the best place to obtain them, look more for farmer's markets or imports if possible. This is stressed in the information I have. This information was compiled from all over the world by Bookman Press, and that includes countries in which doctors do not get rich when you get sick. I have sampled the references in their bibliographies and found them to be legit.

Again don't expect minerals to be a miracle. In many cases the damage is done and it might not be possible to reverse it. Nobody knows, but if at least it doesn't get worse, it's better than nothing. I'll do a bit more checking, but that's what I have now.

T

(in reply to Lizbetbathory)
Profile   Post #: 5
RE: Please help me....Please??? - 9/28/2010 4:59:33 PM   
Lizbetbathory


Posts: 158
Joined: 1/1/2006
Status: offline 		I have tried some natual remedies but they havent really helped much ( my aunt is an herbalist) ... I have 2 lil ones, which I had before I found out what was wrong with me.... I am in a study for long term affects of fusion in shoulders so hopefully my case will help others in the longrun

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game store owner tattooed chick and resident sadist who is in pain alot.... life is fun!

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RE: Please help me....Please??? - 9/28/2010 5:09:10 PM   
Lizbetbathory


Posts: 158
Joined: 1/1/2006
Status: offline 		Im allergic to shark as I found out a while back. My aunt is an herbalist ( not a bullcrap one either, her technical title/degree is in nutrition ) I dont expect miracles. I havent for a long long time.I have a few books "natural foods that heal" etc. My finances are decent. I am not poor but neither am I rich. I have bought so many supplements etc. some have helped a little others ... ehh not so much..... ever seen the movied "hitched" with will smith? the scene where he has an allergic reaction to something ? yeah.. I had that lol My anemia is better since I eat steak tartare and have injection. Ive done pt, I ve had surgury, accu pressure and many more...


Thank you, angellika for the blogs and stuff I know about ednf.. they can be somewhat helpful :)



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game store owner tattooed chick and resident sadist who is in pain alot.... life is fun!

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RE: Please help me....Please??? - 9/28/2010 5:25:46 PM   
Hillwilliam


Posts: 19394
Joined: 8/27/2008
Status: offline 		S Florida has what are basically "Walk in pain clinics". We in East TN have problems with the fact that van loads of dealers go down there and hit a few "clinics" buy a vanload of oxycodone and come back here and sell it to the "pillbillies" or just go to Palm Beach and sell it to Rush. You, as a person that has an genuine need, might want to think of taking a road trip. It is apparently a slam dunk to get medication there.


Dang, after reading your plea, I feel really shitty about complaining about psoriasis.

(in reply to Lizbetbathory)
Profile   Post #: 8
RE: Please help me....Please??? - 9/28/2010 6:03:08 PM   
MistressLavinia


Posts: 1110
Joined: 3/6/2009
From: DFWM in the Land of LaviKinks
Status: offline 		What I know you can do, Is begin writing to all the doctors you find in your area that specialize in your condition, and explain your plight. Of course their will be some who wont listen or care, but somewhere someone will. Write the letter, copy and paste it and send it even via the internet. Some practices have web sites, and contact links.

There has to be a caring specialist in your community who will help you free of charge, and prescribe for you the therapy and meds you need you be able to live a better quality of life.

My Father is a specialist and he helps people all the time, some believe in the Oath they take and some don't. He wasn't a great Father but he is a great asset to the medical community as I am sure there are more of. Please try it, and good luck with your plight -Fight for your right to be well.

Lavinia

Edited: For importance: You should not be taking any medicine without a doctors order and even then question everything. Medicines aren't the cure all, and sometimes do more damage then good, so please don't do anything until you talk to a qualified physician, and you can check them out with the American Medical Society as well.

< Message edited by MistressLavinia -- 9/28/2010 6:46:05 PM >

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RE: Please help me....Please??? - 9/28/2010 6:12:59 PM   
Termyn8or


Posts: 18681
Joined: 11/12/2005
Status: offline 		Liz..... , jumpimg in at post 7.

Allergic to shark eh ? That may or may not mean something. If I may ask, what was your reaction ?

Also, if you have other serious allergies, especially food allergies it may mean something Spitem Out ! (joking). Really any food allergies of note may be telling. Don't get your hopes up, but in these situations sometimes these little scraps of information add up to something. It's all a matter of finding the commonality. If the allegies have been consistent over a long time, certain severe deficiencies can develop. Severe deficiency can and does cause degenerative type diseases. Even if not the cause, it could certainly accelerate the degeneration or exaserbate the symptoms at the very least.

Also note that I have no degree or anything. Check out what I write, I don't claim to be infallible. If something doesn't make sense, say so. I am near totally self educated, so don't contstrue this as medical advice. But I like to encourage people to think outside the box so to speak, when thinking inside the box hasn't worked.

Anytime you think you should check with a doctor, please do so. You could have other conditions that seem unrelated, but may preclude you from, for example taking a certain type of supplement. However food is safe. And the worst part about any changes in diet, no matter how helpful, will take time. Figure it out in the beginning and stick to  it, possibly for years. Expect very little, and if you get more, doon't woory, be appy.

T

(in reply to Lizbetbathory)
Profile   Post #: 10
RE: Please help me....Please??? - 9/28/2010 6:13:20 PM   
Lizbetbathory


Posts: 158
Joined: 1/1/2006
Status: offline 		The community I live in is 3000 the nearest large city is more than 2 hours away. I am trying knoxville and lexington for a doc. There really arent any who specialize in EDS... in fact most doc's only read about it in medical school. I Know all about florida.. here in eastern KY we have the same issues as eastern TN.
Lavina, What does your dad do?


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game store owner tattooed chick and resident sadist who is in pain alot.... life is fun!

(in reply to MistressLavinia)
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RE: Please help me....Please??? - 9/28/2010 6:15:26 PM   
Lizbetbathory


Posts: 158
Joined: 1/1/2006
Status: offline 		Im allergic to capsicum, shell fish and feathers. and all the cillins sulphas, compezine reglan I have reaction to morphine dilaudid etomidate.  Also sensitive to latex and many other things... Ehlers Danlos people seem to have alot of allergies.... 

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game store owner tattooed chick and resident sadist who is in pain alot.... life is fun!

(in reply to Termyn8or)
Profile   Post #: 12
RE: Please help me....Please??? - 9/28/2010 6:16:11 PM   
MistressLavinia


Posts: 1110
Joined: 3/6/2009
From: DFWM in the Land of LaviKinks
Status: offline 		You have mail Lizbetbathory

_____________________________

If somebody offers you a lifetime supply of candy and there is just one piece, don’t eat it: It’s probably poison:
~I am: ~Petal-icious~Bitch with Tits~
~ Ravager ~Sovereign~ LaviKinKs

(in reply to Lizbetbathory)
Profile   Post #: 13
RE: Please help me....Please??? - 9/28/2010 6:35:54 PM   
Termyn8or


Posts: 18681
Joined: 11/12/2005
Status: offline 		FR

I'd like to remind everyone that while paikillers may well be called for, unless someone is terminal and soon, the dosage should not be allowed to snowball. Not even going into the chemical depenedency aspect of it, sources evaporate sometimes, doctors may change and try to tweak things, or you could get close to a toxic level. And someone who takes interest in their own care should not spend alot of time on cloud nine.

I don't think they should be denied to those in need, but an ever increasing dosage, which is almost inevitable is a very dangerous path. Also, when there are options for comfort all should be explored fully. Like certain furniture, so many pillows or blankets in a certain way, and as mentioned orthoses.

Just be careful, after all you have no idea what's in them pills.

T

(in reply to Termyn8or)
Profile   Post #: 14
RE: Please help me....Please??? - 9/28/2010 7:09:59 PM   
Termyn8or


Posts: 18681
Joined: 11/12/2005
Status: offline 		Liz...; Some preliminary research suggests that your body may have trouble absorbing or metabolizing sulfur. For now I'll take that road and see if it leads anywhere. Might, might not. I also plan to see if another deficiency could cause this.

For now, in post 5 listed are sources of sulfur. Do you like/dislike those foods and/or have any adverse reaction to them, even a mild one ?

After that answer I have to go to my other PC because the &%$#$^ network doesn't work anymore.

After that I'll be baaack.

T

(in reply to Lizbetbathory)
Profile   Post #: 15
RE: Please help me....Please??? - 9/28/2010 9:09:35 PM   
hausboy


Posts: 2360
Joined: 9/5/2010
Status: offline 		Hi there--
I had a friend with this condition--so sorry to hear you're in so much pain.
Site below is a national/international support group for those battling EDS:
http://www.ehlers-danlos.org/

There is a facebook page too however since I don't "do" facebook, I don't know if it's any good.

best wishes to you.

(in reply to Lizbetbathory)
Profile   Post #: 16
RE: Please help me....Please??? - 9/28/2010 9:20:02 PM   
Lizbetbathory


Posts: 158
Joined: 1/1/2006
Status: offline 		Thanks I belong to both. As for blankets pillows etc, Ive tried all of that. It isnt just about pain. I cant do simple things like sweep the floor... I try to modify my life as best I can, but it isnt very easy when, for example.... My left shoulder doesnt move so I have to do alot with my right arm... it has caused more dislocation in the joints on my right arm. As for drugs, RX or OTC, I have tried many the doc's have tried many. I HATE drugs I hate going into the ER only to be told all I want is drugs. If I had a choice of living in pain or being a 1 ton bearded woman.. well I think Id be a damn good circus folk! I do everything I can I have done reserch to figure out things to help. there isnt much out there. Doing things like vitamins and suppliments only goes so far. If and when stem cells become available, it will still be a stopgap measure. I hate the fact my subbie and I cant have sex, kinky or otherwise. I have used braces,slings etc. they dont help alot unless it is a major hinge joint and even then it isnt for sure it will stay in.
Today I had both hips and all my fingers dislocate, the ones on my right hand repeateedly. I got frustrated the other day cause my right shoulder kept popping out so I ace wrapped my entire arm to my body. It popped out an hour later.

Edited to say sorry im not trying to be whiney Im just not feeling too hot today


< Message edited by Lizbetbathory -- 9/28/2010 9:30:04 PM >

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game store owner tattooed chick and resident sadist who is in pain alot.... life is fun!

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