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Old 08-15-2011, 09:31 PM   #1
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Severe lower back, hip, and leg pain :(

Hi, My daughter who is 17 has been bothered with horrible pain in her lower back, hip, and legs for a long time. It can be either side but mainly her right. She has sacralization of her lower back (which they say she has always had and should not cause a problem but has never been mentioned on xrays until recently) she also has horrible bladder spasms and has had all this for about 12 years now.(they are saying possible Intersticial Cystitis, she has an appt with Urology) We are waiting on an MRI of her lower back. Last night she was up crying cause the pain was sooo bad, she takes naproxen regular for it, and we use a heat pad, i just wondered if anyone had any ideas what can be causing this? Saltire

 
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Old 08-15-2011, 09:58 PM   #2
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Re: Severe lower back, hip, and leg pain :(

I'm sorry your daughter is having pain and other issues that you mentioned. If you have never done so, I think it would be worthwhile to make an appointment with a spine specialist for a consultation, after you get the MRI of the lumbar spine.

The lower lumbar nerves (in the area where your daughter has the sacralization)
are the nerves that innervate the bladder, bowel and also the nerves from L5 and S1 run down the back of the leg, and fan out across the buttock and over to the area where there are attachments to the hip. These nerves also innervate areas of the groin and pelvic area. If your daughter has any problems either stemming from or in addition to the sacralization, it makes sense that a compression of one of these nerves could be causing or contributing to her pain.

You should look for either an orthopedic spine surgeon or a neurosurgeon who specialize in issues of the back and neck (not a general orthopedic doc. or a neurosurgeon who prefers to be doing brain surgery.)

One of the problems with our western medical training is that doctors tend to consider only one area of the body at a time. When things are inter-related, as may be the case with your daughter, it can be more difficult to get an accurate diagnosis. You end up having to see a urologist and a spine specialist and then figure out how things may be inter-related...for example.

I just wanted to mention that it is not uncommon for people to have hip and leg pain that ends up coming from a bulging disc ( or something similar) at L5-S1. This often pushes on the nerves which come out of the lower spine where they branch into the sciatic nerve which runs down the back of each leg. The MRI might reveal some similar type of problem which is causing the pain your daughter is feeling, and possibly could even be contributing to the bladder issues.

Please let us know how she is doing and what you find out.

 
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Old 08-15-2011, 10:04 PM   #3
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Re: Severe lower back, hip, and leg pain :(

Thankyou for your reply, I feel too that there has to be a connection with it all. You said about the bladder and bowel, well she deals with IBS too so it really makes me wonder. I will let you know how her MRI goes and what happens from there. Thankyou again

 
Old 08-15-2011, 10:12 PM   #4
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Re: Severe lower back, hip, and leg pain :(

Don't be too discouraged if right off the bat you are told that a sacralization does not cause back pain. That is the conventional wisdom, but I don't personally buy that theory. I don't see how you can just rule it out. I know research studies, which were only done on a small number of participants, indicate that sacralization does not cause back pain...but that isn't to say it might not be a contributor to pain, or that it might be causing pain for one individual. After all, we aren't all identical.

I think you are wise to pursue this angle...and I wouldn't give up unless you find answers or it is proven to you that it absolutely could not be connected.

 
Old 08-16-2011, 05:16 AM   #5
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Re: Severe lower back, hip, and leg pain :(

Her doctor said she was probably born with it, but this is the first after quite a few xrays we have ever been told, she did fall from a skateboard a few years ago and hurt her tailbone, i am wondering if this could be the cause of the sacralization

 
Old 08-16-2011, 05:30 AM   #6
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Re: Severe lower back, hip, and leg pain :(

As you know, none of us on the board are trained medical professionals, but from what I have read about sacralization, it is a neuro-tube defect occurring in utero. Some people have it on only one side. It was originally thought that it was a cause for back pain but there have been a number of studies done over the past 15-20 years that seem to support the theory that it is not a pain generator.

It could be that it is sufficiently subtle that no one noticed it previously, or perhaps it just wasn't mentioned. Perhaps as she grows, it has become more obvious. Again, I think it is very important that she have the MRI.

 
Old 08-16-2011, 02:02 PM   #7
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Re: Severe lower back, hip, and leg pain :(

Try an ice pack instead for 15" on and the 15" off, sometime ice works better than heat.

 
Old 08-17-2011, 04:53 PM   #8
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Re: Severe lower back, hip, and leg pain :(

Thankyou, Her MRI is scheduled for next Tues, her doc is not keen on doing it as he doesnt think its causing her probs i just dont get it, she had an MRI done in 2006 and it was ok, nothing showing up but this pain she is getting has been since then and there must be something going on causing her soooo much pain. I feel if the MRI is normal then we can move on and know it must be something else. Will try the ice too, heat does seem to work really well tho along with painkillers, just takes a while. I will let you all know when she gets her results.

 
Old 08-25-2011, 08:24 PM   #9
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Re: Severe lower back, hip, and leg pain :(

saltire , I just wanted to say that I am currently searching for a reason why I have anemia (normocytic it appears) and what you were describing with your daughter, I have the same exact thing going on. I also suspect I have endometriosis, too. I have a low hemoglobin, hematocrit, RBC, and a couple metabolic tests (albumin and total protein) that are slightly low but am told they aren't a big deal.

I have battled joint and muscle pain and currently have some back pain. I also have flirted with a high sed rate but they could never explain why.

This all started when my periods turned horrific. The past 4/5 months I am in tremendous pain, experiencing both period cramps and gas cramping sensations.

That is the only thing I can say had changed before the diagnosis of anemia came to be. My mom had endometriosis. I believe I now have it and it somehow relates to my non-iron deficiency anemia, too.

Anyway, I just wanted to say I can relate to what your daughter is going through. I am older than she is (39) but we share a very similar story. I was even told I had FM and always doubted the diagnosis.

Last edited by Sports555; 08-26-2011 at 03:31 AM.

 
Old 08-25-2011, 09:17 PM   #10
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Re: Severe lower back, hip, and leg pain :(

Hi, My daughter got her MRI and we got the results today and all is normal apart from the sacralization. (its good news but means still no answers)
JohnBCoach - The best way to answer is to tell you her whole story, she at 5 had a very serious kidney infection, after a week in hospital she recovered from that but ever since has had to deal with bladder problems, they did tests to look for reflux but she doesnt have that. She also has always had pain in her legs ( which they used to tell me was growing pains, but she still gets up in the middle of the night with the same pain it is just worse) she started getting pain in her joints, ankles giving way, fingers, wrists knees etc hurt. She also deals with headaches, which she was basically told to take iburprofen as needed or tylenol.
In 2006 she went to a Rheumatologist at a childrens hospital as her doctor was concerned she had Rheumatoid Arthritis but he diagnosed her with Patellafemoral ( which is loose knee caps) and also has other loose joints on her top half, bottom half not so flexible at all(which we now know is from the sacralization, but no explanation for the pain. She also saw a Urologist around the same time, they did tests and thought she poss had Intersticial Cystitis but didnt want to label her with it as she was soo young and there is no cure, so they gave her medicine to help the spasms( which does help but doesnt stop them happening) She also had problems with heartburn and they did tests and turned out she had H-Pylori and was treated for that (twice).
In approx 2009 still with the previous complaints she started getting bowel issues ( after all kinds of tests looks like IBS) she has always had anemia issues and was on iron. She also started getting slight increase in sed rate , plus swelling of her fingers with lots of pain. They were concerned it could be a Crohns or similar thing so they did scopes and ruled that out. she had xrays often for her painful areas showing nothing. When she started her menstrual cycle in 2007 she was soooo ill, had to go to hospital because of the pain and heavy bleeding, took them every 2 weeks with the same intense severe pain. After being put on birth control she is a lot better with them. She has always had some sort of pain but i would say the back/hip/pelvis pain is definately worse now. She was in the high school dance team and had to stop as it was causing too much pain. She also has had episodes of fainting and feeling very very sick. I took her back to the Rheumatologist this summer and he diagnosed her with Fibromyalgia, even although she had a positive rheumatoid factor test they are saying its not rheumatoid arthritis. She has an appt to go to a Urologist who specializes in IC and hopefully get some help there, They are also sending her to a Neurologist who specializes in Fibromyalgia. For the fainting and feeling very sick i started checking blood sugar and it was fine then i started checking her blood pressure and it was low with a high pulse rate, especially in the mornings when getting out of bed, i checked lying, sitting and standing and it went down instead of up and her pulse increased a lot. So i showed the doctor what i had been recording and they sent her to a Cardiologist and she has Neurocardiogenic syncope, after trying home treatments which didnt work she started meds for it and thankfully ( keeping my fingers crossed she is finally feeling better from that). She has been to physical therapy about 5 different times for her pain, ( with no real relief) now takes Naproxen for it. She has pain in the top of her back on the right side and the lower back/hip/pelvis almost everyday. Today she came in from school in a lot of pain and it makes her feel sooo sick to her stomach. We used a heating pad, and her Naproxen and massage and it finally got better. There is nothing in particular caused the pain, it can happen anytime. She also has dealt with other things i think they are all connected but i am not the doctor but i just feel one of these days we will get an answer that we can then be able to help her more.
Her diagnosis as to date are : Fibromyalgia,IBS,IC,bladder spasms, migraines,asthma,Neurocardiogenic syncope, these are the main things and i just think she is way too young to have to deal with all this. Last time she had a urine test done they said she had some protein in it and want to repeat it in Oct.
Sorry this is sooo long and i hope it all makes sense, i probably missed things but these are the most important things.
Sports555 -I wish there was a way of finding out for sure whats going on and hope you get some answers soon too. My daughter has dealt with anemia on and off for years she never gets higher that 12.1 one doctor said maybe she is just made that way, who knows. I just wish i could take away her pain or give her a reason for it. One of these days we will i have to keep telling myself that. One thing i have to say too is looking at my daughter you would not know she was dealing with all this, which makes it more frustrating for her cause she thinks noone believes her unless they see her when the pain is at its worse they would have no clue.

 
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Old 08-26-2011, 08:07 PM   #11
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Re: Severe lower back, hip, and leg pain :(

Saltire, I'm sorry to hear about your daughter. I've been having terrible back pain for over a year now, and I know my mother feels so helpless when I call her crying because I hurt so much (I live 2.5 hours away from her). I've been fighting doctors for a year because they seem to have a hard time believing that a 21-year-old can actually know what pain feels like.

My MRI was normal but my lumbar films showed spina bifida occulta in my L5. The current line of thought is that this (along with joint hypermobility) has caused my muscles to attach and arrange themselves abnormally, and since my joints are "loose," it just makes it all worse. They've suggested PT, acupuncture, biofeedback, CBT, etc.

One thing I can suggest is to help your daughter strengthen her back, stomach, and leg muscles to better support her joints. Make sure you talk with a PT or doctor before you start her on exercises, to be sure you're not damaging anything.

It's kind of creepy how similar your daughter and I seem with our symptoms. I have migraines, asthma, IBS, the joint hypermobility, the syncope... Everything but the back issues I've had since I was her age and earlier. You're definitely not alone in that "she's too young for this" feeling. I also have anxiety and clinical depression, so I struggle with "I'm 21 but I feel like I'm 80" all the time. It's terrible and I'm sorry she has to go through it. If you need to talk or let off some steam, feel free to message me.

 
Old 08-26-2011, 09:09 PM   #12
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Re: Severe lower back, hip, and leg pain :(

Thankyou for your reply and support perfectenemy, sorry to hear you suffer too with no true answers.Its all sooooo frustrating. My daughter has also told me she wondered if she was a hypocondriac but when she thought more she thought no way cause this is way too painful. She also told me next doctor they will send her to is a therapist, makes me mad she feels thats way. I know with Fibromyalgia it intensifies pain but doesn;t explain to me why the pain is there will update as we go to her next appts thanks again everyone for your hugs and support

 
Old 08-29-2011, 09:38 PM   #13
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Re: Severe lower back, hip, and leg pain :(

Hi again, The more i think about things and how nothing is showing up on xrays or MRI to cause her pain, i am seriously wondering if it could be endometriosis? She has her period now and has been getting woken up in the middle of the night with the pain in her lower back hip and down her leg, she has been really sick all day between her stomach, cramps, and bladder spasms, anyone else think it could be? Saltire

 
Old 10-16-2011, 08:34 PM   #14
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Re: Severe lower back, hip, and leg pain :(

I know it's been several months (due to work, I rarely have time to be on the internet for leisure anymore), but if she's having that bad of a time with her period, I'd say take her to a GYN ASAP. There are a lot of things that it could be, but at such a young age it's not worth risking her health or fertility. Even if it's not endometriosis (which I really hope it's not), she may want to look into birth control, as it can offer some relief to women with really bad period symptoms. I've been on it since I was 15 (ovarian cyst, family history of ovarian cancer, etc.), and I've recently (2 years ago) started Seasonique, which is 4 cycles a year. I started noticing that all of my physical and mental health problems got significantly worse right before and during my period (and I almost always got a cold, if I didn't have one already). They're still bad when I get them, but it's much easier to deal with it every few months than every 30 days.

Good luck, and I hope it's been resolved by now!

 
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