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What would you do if you had a undiagnosed condition with constant 24/7 leg pain, twitching, and like you can't stand? It's been going on a YEAR, no relief. No med helps. It is my sister who is experiencing this. She feels now almost a mental breakdown from having NO doctor help her. The pain never stops, and she feels PTSD, depression, depersonalization, and almost catatonic now. She cannot decide what she can or cannot do minute to minute. She feels a vegetable and 'can't take it' anymore :/ She has been in two psych wards b/c she wanted to end her life, but the stay didn't help. (they only 'monitor' you for a bit) Is this an Emergency? Doctors have said 'I don't know what to say.' o.O I find it so SAD they can't even get a team for her to figure out WHAT this pain is??? All neurological tests have been negative. Not sure what to do from here on now. It is heartbreaking watching her cry , and be beyond depressed from this condition.
36-40, F
3
40 replies
35 views
May 19, 2019
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Edited: 1 mth ago
ZenLioness · F
Has she gone to a neurologist?
Seastar · 36-40, F
[@674752,ZenLioness] She has seen 4 :( All tests negative, but pain is still severe daily... tight, stiff leg pain and twitching.
ZenLioness · F
[@562099,Seastar] 😔
My first visit would be to a chiropractor
WaltzingMatilda · 51-55, F
[@20952,IstillmissEP] yes most doctors frown upon them, but they can work wonders.
[@42520,WaltzingMatilda] I walk today because of one.
curiosi · 56-60, F
Went to the doctors for YEARS for a debilitating illness, I ran out of options and they expected me to die very shortly. It was when I gave up on doctors that the healing began. Take from it what you will.
curiosi · 56-60, F
[@562099,Seastar] The pain was so bad I could only crawl and with difficulty.
Seastar · 36-40, F
[@423488,curiosi] *hugggg* Wow. That is awful curiosi!!! :( I'm so sorry. Do you have less pain today?? Did you ever try holistic things/acupuncture/medical marijuana?
curiosi · 56-60, F
[@562099,Seastar] I had nothing left, I spent everything. Had tried some holistic but there were so many symptoms nothing worked.
Lucia · 26-30, T
I'd work on solving it if it was my sibling. Doctors can be great, but sometimes they need to get an answer painted in a picture infront of them before they'll listen.

First step is to find out who else has this. What is the root of the pain and twitching. Second step is to find out how it triggered and under what circumstances.

It may be turn out to be impossible to find out. But hope that someone who has this, and won over it, is out there is really all you have if the doctors can't figure it out.
Seastar · 36-40, F
[@621205,Lucia] I found a blog months ago about a few people who have what she has.. twitching and leg pain with NO diagnosis. They also had every test come back negative, and for one guy, his twitching stopped abruptly after a year of it daily. (but it did come back) I cannot find that blog again :( But that is what I'm working on now, finding others who may have experienced this.. thanks Lucia
Gusman · 56-60, MVIP
Write to a News Reporter stating her case. Happens here. If someone is being done wrong by then getting a Reporter on side always helps.
Not a Letter to the Editor but an individual Reporter you can meet.
You should be able to convince that person there is a genuine problem so it may lead to meaningful help.
No one likes negative press.
Seastar · 36-40, F
[@546016,Gusman] That's an interesting point, thanks Gusman 💙
Gusman · 56-60, MVIP
[@562099,Seastar] It does work here in Australia. Often see people with predicaments going to the press and a substantial story being done.
Leading to a positive outcome. At least getting some meaningful help.
Wish you and your sister well.
Seastar · 36-40, F
[@546016,Gusman] I appreciate that so much *hugggg*
St0ut · 46-50, M
Try a non western procedure

Go to a reiki pratctionioner
St0ut · 46-50, M
[@562099,Seastar] I played stupid games and won stupid prizes. Lol
Seastar · 36-40, F
[@749552,St0ut] 😞🤗
St0ut · 46-50, M
[@562099,Seastar] than you hon
Lostpoet · 31-35, M
That is really horrible. I wish there was something they could do.
Seastar · 36-40, F
[@780464,Lostpoet] Thank you Lost. Me too :( I have seen her cry day after day.. in anguish, and feeling desperate. She has said I hope God takes me in my sleep... It is just so SAd. She is such a wonderful person to have this. Thank you again🐞
Has your sister ever been tested for Lyme disease?
Seastar · 36-40, F
[@737640,ForgottenLore37] Yes I think once or twice , tested.. when the symptoms first began many months ago--- maybe I'll mention for them to try again..
[@562099,Seastar] lyme can be pretty nasty and hard to diagnose. I knew someone with lyme back in high school and it was a horrible experience for him. To make things worse for a long time a lot of doctors didn't want to believe lyme existed
Seastar · 36-40, F
[@737640,ForgottenLore37] Thank you .. aww sorry about your friend. I think after a year of these symptoms she'd have weight loss w/Lyme as well, but I'll def. tell her to recheck it...
firefall · 61-69, M
I'm astonished the doctors havent been willing to treat this as crucial. And a bit horrified.

Have you tried talking to alternative medicine practitioners? I dont put much faith in them, but you're reaching the try-anything point.

The other way might be to google pain speciailists research, and see if you can find anyone speciailising in this area, they would probably be more interested & motivated to find causes, and identify a remedy
Seastar · 36-40, F
[@1725,firefall] Thank you friend- she is going to try a Reiki instructor perhaps, or acupuncture. Her pain NEVER stops , poor thing :( It is just heartbreaking, and EVEN when her PCP wrote a note to a Emergency room for her to be admitted, they STILL didn't accept/admit her. That was awful. They just don't want to take the time to figure out What this is (when all tests were negative) :/ Ty for your ideas, she is also seeing a pain specialist soon
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