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Undiagnosable leg pain
  1. #61
    Jorelishe is offline New Member
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    I have lurked this thread for a while, and finally caved and made an account on this site just so I could reply, even though I know it’s very old.

    I’m 27, and I have also experienced severe leg aches since I was a kid. I would scream and cry and my parents would have to rub my legs, even though it didn’t always help. “Growing pains” is what I’ve heard my entire life, but I’m very short and with the amount of pain I’ve been through because of this throughout my life, I should be a lot taller than 5 feet.

    Heating pads used to help, but in the summer they make me want to die. The older I get, the less things help (topical stuff, OTC pain relievers, etc). I always mention it when it happens if I’m with a friend, and they can never relate. I’ve always treated it like a headache, just pop some ibuprofen and it’ll go away. But I don’t know WHY it happens. Sometimes it happens when I’m on my feet. Sometimes when I’m trying to go to sleep. Almost always at random times. I get them from my ankles to my hip. Never in my feet (although sometimes the arches of my feet lock up if I’m on them for too long). It might start in my ankle and move from my knee and sometimes it will reach my hip. Or it will start in my knee and spread to my ankle and hip. Sometimes it’s just one, sometimes it’s both legs. It’s more my muscle than my bones, although my joints have always been bad too, very crunchy, easily popped, and recently my hip locks up a lot and feels like it’s popped out of the socket, or feels like it needs to be popped.

    I have finally made an appointment with my PCP in a few days to talk about this, because the pain has become unbearable and I’m sick of not knowing what’s wrong. And finding this thread has given me hope, but had also made me worry more because no one seems to really know why this is happening.

    I’m curious if anyone else was born breech? I was, and I’ve been doing some research on the affects being breech can have on an adult.

    I have tried stretching and doing yoga, but it seems to make my joints and muscles feel worse. I am also on birth control, anti depressants, and take vitamins, so I don’t want to be on more medications for the rest of my life. I don’t drink or smoke, but I’ve been looking into using CBD for pain management because as much as I hate weed, I hate the thought of prescription pain pills even more.

    I have heard lots of suggestions of what my diagnosis might be, but there hasn’t been anything yet that’s like YES DUH THAT MAKES SO MUCH SENSE. I’m anxious about my appointment because there seems to be a pattern of no physically visible problems, and I’m worried my doctor won’t believe me (I am even bringing my mother to back me up). Wish me luck I guess?
    Lvg nghtmare and Alice_H_C like this.

  2. #62
    Alice_H_C is offline New Member
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    Default Thank god you have posted in this forum even though it is so old!

    Hello Jorelishe,

    My name is Alice and I have recently came across this forum and was relieved to finally see posts relating to the leg problem I am consistently having, but was quickly taken aback after realizing that the post was from almost 11 years ago, and that no one has posted in it recently, until I saw your response!

    I really really really hope you get the notification to this response so we can talk more.

    I too, am experiencing the same awful leg pain that you are and I have never been able to relate to anything more than your post! I'm 20 years old, and I have been suffering from these pains for as long as I can remember. I would go through awful pain at night when I was little and would essentially cry myself to sleep with my mom rubbing my ankles back and forth, switching from one to the other after maybe 20 minutes. She as well always told me they were growing pains, and that one day they would stop coming. A part of me did used to truly believe they were growing pains as I am now 20 years old and approximately 6 feet tall, except the only problem is that I stopped growing by the time I was 17, maybe 18, but that's pushing it and I am STILL TO THIS DAY, getting these awful aching pains! (Infact I have one right now as I lie in bed and type this)

    When I was younger, they didn't come as frequently as they do now, but when they did come the pain was awful, as my mom can remember me having them at even the age of approximately 8, but now, I get them almost two to three times a week and I am way passed my growing stage and it is absolutely awful! They rarely occur in the morning, but could randomly come at any point in the day, but mostly at night. I'm in university and so I spend a lot of time sitting in a still position at a desk for countless hours, and so I think that ay have something to do with it, as tonight, I was at the library at a desk for almost 5 hours, and have the awful pain in my right leg, (which might go away with a heating pad, but probably won't and I'll have to wait until morning before it is gone) The pain basically could start in the frontal thigh of one of my legs, and then move down into the ankle, and then some days even switch to the other ankle or the other leg even! I was looking into restless leg syndrome and I was happy because I thought maybe they could actually diagnose me with something and fix this awful pain, but after researching more, I am convinced I do not have it as I do not at all get that creepy crawly feeling, it is just a straight, constant aching feeling.

    Just like you, I was extremely happy to see in the forum that I was not the only person in the world experiencing it, but got extremely sad after seeing that nobody knew what it was. Even my doctor in May said that people just get aches and pains in there body for no reason and no one knows what its from, but this thing I have is not just the typical ache or pain everyone gets once a month, it's something way more or else I would not be writing about it now, and I would not have this huge story with it, I KNOW that it is something! It is the exact same thing every time! These pains are starting to take over my life and they even get to the point of having to actually take the time to ice or heat parts of my legs before I can go out and do something at night. & also, it is completely awful when you're trying to do school work and all you feel is this constant throbbing, and it's the only thing you can think about!

    I could probably go on about this for much longer, but I guess what I'm trying to ask, is since I believe you posted this maybe just over a month ago (which once again, you have NO idea how relieved I was), how did your appointment go? what did they say? Please say you have some sort of information on this, ANYTHING, as I am almost certain we have the exact, same problem. I read your post and it honestly seemed like I wrote it myself.

    I really hope you are able to see this post soon, as I do not know another way to contact you, but it would be great if we could talk about this, believe me when I say, as I'm sure you feel the same way, I DO NOT want to live the rest of my life with these awful awful awful pains.

    Thanks,
    Alice

  3. #63
    Jorelishe is offline New Member
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    [deleted - breaching forum rules]
    Last edited by Anonymous; 10-19-2017 at 08:18 PM.

  4. #64
    emilyfirster is offline New Member
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    Default Same Pain, No Idea

    Like eveyone else on here, I've had a horrible leg pain for years. I am only 17 and for the past year or so I've been stalking this forum just hoping that someone has post an answer to why I have this pain. It is only in one leg and always has been. It's hard to tell where the pain orginates from since it seems to radiate throughout the leg but mainly in the knee area and it travels up to my hip kind of. I've had every test imaginable and even gone to physical therapy but doctors haven't found anything and it's getting to the point of where I'm starting to doubt my ownself since it seems like many doctors don't believe me. The only thing that seems to ever knock the pain out are painkillers but I can't stand the feeling of taking them. I'm mainly finally posting on this thread so if any new post come up I'll hopefully find an answer

  5. #65
    Jorelishe is offline New Member
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    AHHHH I replied with my contact information but it was deleted and I don’t know how to message you, but I would LOVE to talk about this more because no one else can relate to me!!!

  6. #66
    Jorelishe is offline New Member
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    I 100% understand, I feel like people think I’m making it up, because no one can figure out why it’s happenknf.

  7. #67
    Jorelishe is offline New Member
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    UPDATE: Not sure if anyone will ever see this, but I got a ton of labs and everything came back fine. I received a referral to see a specialist soon, I also requested to be tested for EDS

    I highly suggest you all look into it and see if it’s something that could be a possibility for you. I may or may not have it, but after hearing about it, SO MUCH makes so much sense.

    I guess I will keep posting updates, even if no one replies. We have all seemed to have stumbled upon this thread at some point over the years. I would love to hear updates. I hate that other people understand how unbearable this pain is, but I am very happy to know that I’m not crazy and this pain I have been experiencing my entire life is real, and that I’m not alone.

  8. #68
    emilyfirster is offline New Member
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    Quote Originally Posted by Jorelishe View Post
    UPDATE: Not sure if anyone will ever see this, but I got a ton of labs and everything came back fine. I received a referral to see a specialist soon, I also requested to be tested for EDS

    I highly suggest you all look into it and see if it’s something that could be a possibility for you. I may or may not have it, but after hearing about it, SO MUCH makes so much sense.

    I guess I will keep posting updates, even if no one replies. We have all seemed to have stumbled upon this thread at some point over the years. I would love to hear updates. I hate that other people understand how unbearable this pain is, but I am very happy to know that I’m not crazy and this pain I have been experiencing my entire life is real, and that I’m not alone.
    Hello! I know you often come back to this page and i was just wondering if you’ve gotten any farther with the EDS path? Please keep us updated!

  9. #69
    Jorelishe is offline New Member
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    Yes! After an appointment with a physical therapist who did more labs, and a ton of X-rays that all came back normal, it’s pretty clear that it’s EDS. I don’t have it as severe as others, but I’ve definitely got it. My message about requesting to be tested for EDS did not get back to him, but he had actually already put it in my chart haha. I also joined the EDS support group on Facebook and that’s been a really great resource. A ton of people talk about constant leg aches since childhood too!! There isn’t a cure, but at least it’s an answer. You can be genetically tested for it, but there isn’t anyone close to me that does it. But I HIGHLY suggest asking your PCP/GP to refer you to a physical therapist or a musculoskeletal specialist who can look into it if it’s something that you suspect.

  10. #70
    daniellenichole is offline New Member
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    Quote Originally Posted by wearethree1 View Post
    Hello all,
    I have suufered from severe lower leg pain, from just below my knee to just above my ankles, ever since I was about 5 yrs. old. I am now 32 yrs. old and the pain is getting worse, moving into my knees and ankles. I have been to every type of specialist, except a rheumatologist, probably 15 or more. I have had Xrays, epidural blocks, nerve conducton studies, and have tried several non-narcotic medications. The doctors find nothing wrong with me by looking at xrays and my legs, and none of the other treatments have worked. There are two reasons I have decided to try this route for some kind of enlightenment. One being that I would like to know if anyone has ever experienced or heard of such a thing. Second, I am going to school to become an RN with every intention on going all the way to my masters degree, and I have alot of resources right now to try to figure this out. I thought that if anyone else had this problem, if it remains a mystery, that the more data I have would possibly help me figure this out. And, maybe even help others out as well, unless I am the only person in the world with this problem.
    Run down of symptoms: pain not nessesarily in the joints, constant aching pain whether active or not, long term, not due to an injury, very minor arthritis in back(typical for age), rubbing, heat/cold, elevated no relief. I would appreciate any feedback.
    Thank You,
    Frankie

    Frankie Patton
    Hello Frankie,

    I understand you posted this thread a decade ago but I thought maybe just maybe you still had some sort of connection to it. I am 32 years old and have suffered from very similar leg pain that you described ever since I was 19. I have been to numerous doctors specialists even rheumatologists with no explanation. I have given up. No treatment or anything has helped me. Some days, I can barely walk I hurt so bad. It is a constant ache with sharp pains periodically in both calf muscles. Some days are better than others, but if I do any sort of activity no matter how small I pay for it the next day. I have spent over 10 years going through tests and numerous doctors for them to tell me they cannot find anything wrong. It is very frustrating and depressing. I feel it is making me depressed because I always hurt and never feel good. As I have been getting older, the pain is getter stronger. I do not understand why no one can help me or figure anything out. I've changed my diet to what doctors have recommended and even went through physical therapy but still no improvement. I have even had ultrasounds done on the blood vessels in my legs and all but still everything appears normal. I am lost and scared. As I age I keep getting worse. At 32 years old my quality of life is that of a 60 yr. old. Have you found any solutions to your problem?

    Thank You!
    Danielle
    Last edited by Anonymous; 03-20-2018 at 08:51 AM.

  11. #71
    Jorelishe is offline New Member
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    I think I mentioned this in a previous comment recently, but after dealing with the leg aches my whole life, I was finally diagnosed with Ehlers Danlos Syndrome and suddenly everything made sense! Have that been mentioned to you at all???

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