Question about thigh pain

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 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

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

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.

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!!

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

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.

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

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,
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

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!

Ry, glad you found a drug that works! Thanks for letting us know about it.

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

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.