Question about thigh pain

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ryand
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Date Joined Dec 2007
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   Posted 6/8/2008 5:54 PM (GMT -7)   
In all the years of my back pain, I haven't really had pain radiating down my legs....until now. In the last few weeks, I've started having burning pain running down the outside of my thigh from my hip bone to my knee. I see the doctor tomorrow, but she hasn't really been helpful eyes so I want to be prepared to ask the right questions. Does this suggest nerve pain? I have some bulging and torn discs in the low back, but I haven't had pain before from them (the bad pain is higher in my mid-spine). Is it possible that the bulges/tears have worsened and that is causing this pain?

As I said, I am going to see the doc tomorrow, but I would appreciate any input any of you have to offer. Maybe if I go in with the right questions she will decide to help this time!

Thanks,
Ry

Lindaloo
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Date Joined Sep 2006
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   Posted 6/8/2008 8:09 PM (GMT -7)   
It sounds like you could be experiencing sciatica too. The lumbar region can be affected and irritating the nerve root. Let the doctor decide and good luck with your appointment.

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


PAlady
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Date Joined Nov 2007
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   Posted 6/8/2008 8:38 PM (GMT -7)   
Ry,
I think nerve pain is certainly a possibility. If this is your PCP, I'd suggest a referral to a neurologist to assist with an accurate diagnosis. Could be related to many things, but if someone minimizes the worsening of your symtoms, I'd try to find another doc. Worsening nerve pain is not a good thing regardless of origin.

good luck!

PaLady

SJH
Regular Member


Date Joined Jun 2008
Total Posts : 87
   Posted 6/9/2008 12:50 PM (GMT -7)   
You know, I have had the same problem for a LONG time but never addressed it because my back pain was much worse, but yeah it shoots from your butt/hip to your knee and sometimes ends up in your foot? If it's the same, and you find out what it is, let me know. I hate to tell my Doc any extra stuff because I hate to sound like a whiner.... but I'm curious...

modernartgrl
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Date Joined Jun 2008
Total Posts : 14
   Posted 6/9/2008 1:59 PM (GMT -7)   
I too have a new similar symptom I am worried about but afraid to bring up to doc. Most of my pains are from a three level rupture and all have been fused. I have two plates, twelve screws and rods from 4-7. Usually the pains are in my arms, neck and shoulders. The damage left my arms weak, numb after four years now. Recently, my elbow and hip on the right side are hurting like crazy and I don't know why? I am on fentanly patches and lyrica but they aren't helping with the new pains. Has all this simply left me with more joints going bad due to overuse of limbs that work to compensate for those that don't?

Question; can nerve pain expand and travel down and out to other places in the body or is this a new rupture/injury happening? I don't remember what it is called but I recall hearing about nerve pain that can travel down pathways beyond the initial injury site.

I know we are not doctors in here but we all have similar experiences and maybe can give each other ways to deal with the docs. I fear that my doc will think I am finding new ways to complain about pain. So far he's been great and I have no complaints. It is just a fear that has developed over time.

modernartgrl
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Date Joined Jun 2008
Total Posts : 14
   Posted 6/9/2008 3:34 PM (GMT -7)   
That's it! Peripheral neuropathy... I am wondering if that is it. Thanks for the input. Oh boy, I get to tell the doc about new pains when he's been trying to quell the ones I already had. ;)

Nice to meet your acquaintance too. I've been snooping and you are quite a positive presence here. I hope to be able to help others in the future once I learn a few things about managing CP. But first... gonna have a lot of questions to get answered. lol.

I am suppose to consider the SCS but it freaks me out a little.

modernartgrl
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 6/9/2008 3:54 PM (GMT -7)   
Oh, gotta tell this story! Yesterday I was pulling weeds out of my front yard. I was starting to hurt after twenty minutes or so but I wanted to accomplish something! The weeds are taking over my yard and they are not the ones you can smoke. ;)

One weed was a real hum dinger and turned my leg sideways a little to give it a good yank. Man did it hurt. Felt like my leg had been ripped from the socket. I almost passed out and fell to the ground on the sidewalk. Splayed out flat like a animal hit by a car, clutching my right hip. I don't know how long (five minutes?) I laid there in pain wondering if I would be able to get up and walk back into the house.

It was a really hot day here in Texas!

Then the police pulled over to ask me if I was alright from the car window. They must have thought I was suffering from heat stroke. I sat up and I told em I was fine and they drove on. I was so embarrassed!!! I limped back into the house. The weird part is, just a few minutes I could put all my weight on it and it did't hurt at all. It does not make sense to me.

Such is the life of a CP person. You never know when you might expose your underwear to the police!!

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 6/9/2008 9:43 PM (GMT -7)   
Thanks, everyone, for your input. I did tell the doc about it today. She did not want to do an MRI or x-ray or anything like that. She prescribed a new med that is supposed to help nerve pain. Zonegran? I hadn't heard of it before, but if it will help, I'm on board! I'll start that tomorrow on a step up plan. I never got any relief from any of the other anti-seizure or anti-depressant meds we've tried, so I'm crossing my fingers here.

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 6/9/2008 10:03 PM (GMT -7)   
Ry,
I apologize for not remembering all your history, but have you ever had an MRI? If not, I'd really wonder about this doc just pushing more meds on you without adequate diagnosis. I mean, the meds are fine while you're waiting to try to identify the causes, but why isn't he/she looking more closely? Again, don't know if this is a neurologist or PCP but IMHO you need the former. If some compression on a nerve is worsening and you let it go, it can result in permanent nerve damage as Gramps mentions.

Something doesn't seem right, but that's nothing new with our docs!!

PaLady

modernartgrl
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Date Joined Jun 2008
Total Posts : 14
   Posted 6/10/2008 1:13 AM (GMT -7)   
Ry,

I agree with PaLady. I think you should be getting some tests to make sure something isn't causing nerve root damage. Is it standard practice to just drug up a patient with pills until the problem causes damage?

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 6/10/2008 1:10 PM (GMT -7)   
Thanks, PAlady and modernartgrl. This was my PM doc, and I have had MRIs, CTs, discograms, nerveblocks, RFablation, .... the list goes on. The MRI's I've had show discs that are bulging and torn and leaking in the low back (I think around L4-L5?). The discs at L1-L2 and lower Thoracic discs (which is where my bad chronic pain is) look clean with only Schmorl nodes and mild stenosis. According to the PM docs (I've been to 3 so far), my MRI and CT scans are "unremarkable." After doing the discogram study, they said that the healthy (relatively speaking) discs are the ones that are generating my chronic pain, and the torn/bulging/leaking discs at the low back didn't cause pain when injected. One of the docs also told me that my scans show that I have Juvenile Discogenic Disorder - which essentially means my spine is degenerating at a faster rate than average, and he said it cannot be treated because almost every disc I have would need to be replaced. Loads of help, right? Anyhow, these scans are all over a year old, but my current PM doc said yesterday that since my scans are "don't show anything," there's "no point in looking again." Yeah, seriously. Good grief... Imagine if everyone else got to work that way! "yes, ma'am, I know you have water in the basement, but two years ago when it rained, nothing came in, so there's no point in checking the roof again. Here's a mop!" Sometimes I think pain management clinics should really be called "treatment avoidance clinics" - the motto could be "You pay, We delay!"

This is sort of an extension of the issues I've had with all the docs I've seen throughout this whole ordeal... I know many of you can relate. They look at my scans and say that nothing on the tests looks bad enough to be causing the degree of pain I'm having. On more than one occasion, the pain has progressed to the point where I am unable to walk or even stand or sit up and have had to be hospitalized and treated with IV pain meds, but even then the docs sort of write it off. The last time, they told me that I should expect to need hospital IV pain med treatment every couple of years since my body is so worn out from trying to compensate for the back pain. I said "wait a minute - that isn't okay! I am an otherwise healthy young person. How is it okay that I would have this much pain? How is it okay that you KNOW I will need to come to the hospital again because my pain isn't being managed enough? How can you not see that something needs to be done to TREAT me?" But that's exactly what is happening. Unfortunately, I am out of doctors too. I have seen every PM within a day's driving distance, so I don't know what to do next.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/10/2008 1:23 PM (GMT -7)   
Ry,
Thanks for explaining. I don't know how old you are (an inappropriate question!) but I wonder what the prognosis is for juvenile discogenic disorder. Have you had this diagnosis confirmed by a second doc - perhaps one who specializes in this. Sometimes you can even send records out of town to places for second opinion without going. Then I would wonder what the prognosis is. It may be hard to hear, but if the docs think that your spine will weaken at a faster rate than normal, maybe they don't feel there's much else they can do but manage pain via meds - be the IV or other. I really hate to say that, and i don't know if it's true, but certainly you'd at least want to confirm it so you know what you're dealing with. Then you can do what the rest of us have - try to make peace with what we've got, and find the best pm we can under the circumstances. And those circumstances can mean a lot of things from where we live (availability of pm) to our physical conditions.

One thing you might try, if you haven't already, is learning as much as you can about your diagnoses by researching on the internet. You can sign up free for Medscape, which hooks you into the research that docs access (they access Medline, which is the technical research stuff and at times may cost you a fee but Medscape costs nothing). Knowledge is part of our power, even though sometimes we learn things we wish we could avoid.

I still wonder if the docs aren't doing addition MRI's because they think the discogenic problem will continue to worsen, so why bother? BUT I don't know if that's true. I mean, what if something can be done? On the other hand, you don't want to go into a ton of surgeries if your spine is weak and the surgery may not make things much better. I just read an article on Medscape about the higher risk of degeneration of disks that are next to the ones that have been fused via surgery, and the more levesl you've had fused, the greater the risk of degeneration of adjacent disks. I just had a double fusion that has failed. Fun., eh?

Hugs,
PaLady

modernartgrl
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 6/10/2008 2:06 PM (GMT -7)   
Well, Keep in mind that just because test don't show why there is so much pain, it doesn't mean the pain does not exist. Most docs know this, but if you run into one who thinks your imagining it, then find another doc. I don't think doctors know everything yet about pain, especially nerve/spine type pain. As long as your functioning by walking, moving etc., then they don't want to do too much cutting. Good plan really. ;)

I am so sorry to hear about your condition at such a young age. That really does not seem fair and it will be a tough road ahead for you. I had a three level rupture in my neck that did cause upper body paralysis so they had to do a emergency surgery to stop the damage from progressing. The purpose of surgery was keep me from being paralyzed and keep me moving. It did help with the severe pain but not the day to day pain I have been trying to manage since. I too am told that my situation is degenerative but there isn't much they can do.

PaLady is right, they probably think they would do more harm than good by doing surgery. If they fuse, then the levels above and below are at risk of blowing too. It is called "The domino effect" and you don't want that!

Unless surgery is warranted (reasons above) the docs will try drugs to do two important things; keep the swelling down and keep pain manageable. I am overwhelmed by all the drug choices out there and I can be thankful for that at least.

Life has dealt you some heavy cards to play but you can stay in the game with a strong will and mind. I have had to keep re-evaluating my career and social life with new answers since the old ones wouldn't work for me anymore.

Know that this board is just a starting point. I think I will try and find a face to face support group and I urge you to do the same.

Hugs

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 6/10/2008 3:00 PM (GMT -7)   
Thanks, guys. I appreciate your concern and encouragement so much. I have tried to research JDD on the net, but I cannot find much at all. The doctors haven't said they don't believe me about the pain, but they stop short at really treating it. Gramps, you are right I think. I know I should be more aggressive about this and force the issue of a new MRI, but I am just so tired of it all. You know? I know you do. I know I'm not the first to go through this. Right now, I have a minimal amount of pain-killers, and so long as I take them consistently I manage - barely. But at best, it just takes the edge off. And even though the doctors know that, they seem content to let things be. I know I should find a neurologist like Gramps and PAlady suggested, or make my PM do another scan. I am just so weary of it all. I am so sick of seeing new doctors and having them tell me they will help but then after bleeding my wallet dry and conducting painful tests they shake their heads at me and tell me they can't do anything to help me and I just need to accept the fact that I will have intractable pain for the rest of my life. Do they even listen to what they are saying??? It's not that I want surgery - that scares me more than ever after seeing so many of you who've tried it and not had a good result. I just want them to really try to help. I've had a course of meds that works - it's been documented even. It was prescribed by the hospital the last time I was there. But Gramps - you nailed this one - my PM doc took one look at the drugs I was given and said "those drugs are only for end-of-life cancer pain." and promptly refused to write a continued prescription for them. I asked about patches (since fentanyl worked in the hospital) and the pump too, and the doc told me the same thing....those are only for cancer patients. ARGH!

OK, I'm done whining. Thanks so much for your support. Tomorrow will be a better day. I'll get up the wherewithal to insist upon a new MRI. Or I'll figure out how to find a new doc (again...). PAlady - I hadn't thought of sending my stuff somewhere. That's something to think about too.

Thanks again, all of you.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/10/2008 3:07 PM (GMT -7)   
Ry -
I do agree with Gramps, though, that you'd need a current MRI to send off somewhere. They might want both the old & new for comparison, but if you sent off something that's a year old the first thing they'd probably say is get a current one.

And yes, I do know what it feels like when you just don't want to start all over again. Sometimes then I have to take a bit of a break, catch my breath, and then get back in the ring.

Take care,
PaLady

ryand
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Date Joined Dec 2007
Total Posts : 639
   Posted 6/10/2008 7:31 PM (GMT -7)   
BTW, Delilah, thanks for sharing your story. I have a question for you - when you first started having this issue, did it come and go before it got really bad? All day today I haven't had the pain or the tingling sensation. Weird, b/c the back pain has been just through the roof today. Come to think of it, maybe that's why I don't notice the leg stuff. Perhaps my pain receptors are too busy dealing with the back! tongue

I just took the first dose of this new med. We'll see what happens. I have a follow-up with the doctor in a few weeks, so I am going to ask for a new MRI if I'm still having this pain then.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/10/2008 7:41 PM (GMT -7)   
Ryand,
Could it be the medication? Because if it is, I sure want to know! I have had pain radiating down my leg and numbness/tingling in both feet for nearly 4 years. I take neurontin, which helps, but I know makes me a little tired and less sharp. So if there's another med that helps with nerve pain I sure want to know about it!

PaLady

ryand
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Date Joined Dec 2007
Total Posts : 639
   Posted 6/10/2008 9:47 PM (GMT -7)   
Oh, sorry, PaLady. I just took the med at 9:30 tonight, so it couldn't be that yet. However....I read the reviews on webmd for this med and there were a couple from people taking it off label for pain and they were VERY positive about how it worked. I tried neurontin and a couple others before also and none of them worked, plus the neurontin made me have really bad memory issues and trouble even completing a thought. The reviews on this med seemed to indicate that they did not have that issue so much. Oh, also this med tends to cause weight LOSS rather than weight gain like most of the other anti-seizure meds do. Not a real big issue for me, but I've heard (well, read tongue) several people here remark on wishing they had one that didn't cause weight gain.

I'll be sure to let you know how it goes after I've been on it a while.

Ry

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 6/11/2008 11:34 AM (GMT -7)   
Well, after the first dose I have to report that for the first time in MONTHS, I slept through the entire night! I can hardly believe it. I woke up this morning and was shocked to see the clock. I haven't been able to sleep more than about 2 hours at a time because the pain wakes me up. The only thing I changed last night was taking the Zonegran (well, it's Zonisamide, the generic), and I slept for 5 hours! FIVE!!! Woo Hoo!

tongue

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 6/11/2008 11:44 AM (GMT -7)   
Great news, Ry! I'm going to read up on this drug later on.

So glad you're getting some relief!!

PaLady

modernartgrl
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 6/11/2008 3:10 PM (GMT -7)   
Ry, glad you found a drug that works! Thanks for letting us know about it.

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 6/11/2008 4:57 PM (GMT -7)   
Well... I think I need to clarify...

I slept for longer at one shot last night than I have for a long time. This med made me sleep. It did NOT help with pain (at least not yet). I woke up hurting a LOT as usual. sad In fact, I had to take the maximum amount of pain meds I am allowed to have today. Maybe (I hope, I hope...) it will help with the pain after I've taken it longer. I don't know, but for now I think I can only say it seems like it will be a good sleep aid. I'll try to keep you all informed about the progress.

Ry

Post Edited (ryand) : 6/11/2008 6:05:08 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/11/2008 5:51 PM (GMT -7)   
Ry,
I haven't had a chance to research the med yet, but you may want to. That way you'll know if it takes time to build up in your system before it works, or what the standard dosages are. Lots of times docs start out at the lowest possible dose, and if it's not working then you'd want to let him/her know. But it really depends on the med. Or you could call your pharmacist.

Hope you at least get another night's sleep tonight!

PaLady

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 6/11/2008 6:23 PM (GMT -7)   
Yes, it is one that gets stepped up. I'm taking 100mg right now and each week I'm supposed to add 100mg until I get to a target dose of 300mg/night. I found varying information about dosages on this when I looked on the internet. One place said the maximum allowed dose (used on-label to treat seizure disorders) was 600mg. At another location on the same site, though, I found dosing directions which indicated that the maximum dose would be 400mg... From what I've read, people don't seem to complain of too many side-effects from this drug, but most of the comments I found were for on-label use. There were a few who took it for pain, though, and they said good things, so I'm hopeful!

Thanks,
Ry

Mochiah
Regular Member


Date Joined Dec 2007
Total Posts : 450
   Posted 6/11/2008 10:22 PM (GMT -7)   
Ry - admittedly, I haven't read through this whole thread. Once I read you were on Zonegran I thought I would chime in. It's in a good way, too.

Both my mother and I were put on Zonegran some time back and we both lost weight. I stopped taking it after 2 months because it gave me REALLY bad constant leg pains like a charley horse. My mom stayed on it and lost about 30 pounds!

If I remember correctly, this medication is actually used to prevent seizures and migraines, but has off-label use for neurologic pain, in part due to the side effect of weight loss.
Mochiah/a.k.a. Sue
cervical fusion 2006
L4-5 surgery with cages, plates, and screws in 2005
MEDS:  Fentanyl patch, Norco, Celexa, trazodone, and Flexeril
 
To handle yourself, use your head...to handle others, use your heart
 
I'm going to smile like nothing is wrong, act like everything is perfect, and pretend its not hurting me.

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