Please help diagnose my leg pain - doctors are stumped

I apologize for the fact that I keep using this board for medical advice, but as I wrote in my last thread about my leg pain, I don’t know where else to turn.

I’ll give a summary so you don’t have to go read that previous thread.

In July, I blew a large sum of money on a bike that I had lusted after for a year. One of those heavy, slow, Dutch bikes. I had also been doing strength training at the gym for years. And I had been riding a cruiser bike to work, 2 1/2 miles each way.

First week riding the new bike to work, everything went great. Second week, I ended up doing too many squats at the gym and my legs got sore. I stopped the gym for a while but continued to bike. I started noticing that my legs were hurting after riding, and started to panic, thinking, “Oh no, this bike is too heavy for me, and after I spent all that money on it.” So in an effort to “prove” that I could handle the bike, I decided to work through the pain. It got to the point where my legs were hurting even when I wasn’t riding. I made sure that the seat was at the proper height, and even raised it more, just to be sure. It didn’t help.

It wasn’t until later that I remembered having done too many squats at the gym. To this day, I don’t know what caused the problem - whether the bike was indeed too heavy, or that I simply hurt my legs at the gym and then compounded it by not taking a break from riding. I had terrible pain in my quads, as well as the area right above both knees, which got worse the longer I stood.

I stopped all physical activity for 2 weeks and was still hurting. I went to see an orthopedic doctor, who had some x-rays done, which showed nothing. He told me it was simple muscle soreness, and I should go back to riding. I waited a few more days, and then did so. It was like pedaling through glue - I could barely move them. I again stopped all physical activity. From then on, I was in near-constant pain, thus the title of my previous thread. I could barely stand or walk.

I called up the orthopedic doctor and asked if I could get physical therapy, so he wrote a prescription. Around this time I noticed that I seemed to have a lump (or swelling) in a 2-inch area above my left knee. I mentioned this to the PT. Without even looking at it, he said, “Muscles on opposite sides of the body can be different sizes. It’s nothing.” At my third PT appointment, he massaged my knees, and later that day I noticed the swelling was much worse. I showed my husband and he could immediately see how swollen it was.

So I went to my primary care physician. She agreed that it seemed to be severe muscle soreness, although unlike the orthopedic, she advised staying off my feet as much as possible. She said sometimes muscle soreness can take months to heal. A few weeks later I went to see her again because the pain got worse for a while (I don’t remember why). She advised me to see another orthopedic doctor, and recommended a nearby practice. After getting the appointment and speaking with the doctor, he refused to treat me because I had already seen that other orthopedic doctor and “we don’t do second opinions.”

By this point, my quads were feeling much better, but I still had pain and some swelling in that area above my left knee. So I went back to the original orthopedic doctor. He didn’t see any problem with my left knee (the swelling had gone down somewhat, but the pain hadn’t). He ordered an MRI, which showed nothing. He again felt my knee, and made some condescending remark, “I still don’t see this swelling that you say is in your knee.” He then recommended that I look for a second opinion elsewhere if I was unsatisfied.

And that’s where I left off on the previous thread.

So, back to my primary care physician. She recommended another doctor. (Her listed specialization is “physical medicine.”) This new doctor seemed more interested in helping me get to the root of the problem. She wondered if it might be a nerve issue, so she gave me an EMG test. Again it showed nothing. She ordered some blood work, and said that we should consider trying PT again, but a different person/practice. The blood work showed nothing, and I have an other appointment with her in a few weeks.

So right now, as long as I keep walking to a minimum, my life is normal. I am generally in no pain, as long as my only walking is to/from my car, or the minimal amount of standing I need to do to cook dinner or take a shower. However, this life is far from “normal” for me. Exercise was a huge part of my life. I live in a very walkable area, and was used to walking/biking for almost everything. It kills me to have to take my car for every little trip, as now I’ve become one of those lazy car-centric people I used to deride. I haven’t biked to work in months, despite the wonderfully mild weather we’ve been having. I haven’t worked out at the gym, and every time I’m at work I dread running into someone from the gym, who will cheerfully say, “Hey, we miss you at the gym! When are you coming back?” and I have to keep saying, “Not yet, not yet.” (I tried just working my upper body but still ended up with sore legs - I was probably tensing my whole body as I worked out, so I gave up.)

Today I had a day off of work and did some errands. I went to the library to return some things, and then had to stop at Walgreen’s. Normally I would have done all this by bike, and was annoyed at having to drive. So when I got to the library I thought, “I’ll leave my car here and walk to Walgreen’s and back.” Well, by the time I got back to my car I was sore. I had a bit of burning in my quads, which was to be expected, as it was the most exercise I had done in a while, but then that spot above my left knee was hurting again, badly. I spent the rest of the day sitting down, or hopping on one foot when I had to get around. I looked up the distance and I had walked 1 mile roundtrip. Before this whole incident, one mile would have been nothing. But now, thinking about how I can’t even walk for a simple errand, I want to cry.

The thing is, we still don’t know what the problem is. All the tests show nothing. I’m starting to think that this will never get better, and that I will simply have to adjust to a life without physical activity, and then I want to cry all over again. These past 4 months of sedentary life have been miserable - I don’t want to be like this for the rest of my life. How will I ever manage going for a walk in the park, or going to an amusement park, or any kind of social activity that involves a lot of standing? Not to mention, it’s hard to keep explaining to people why I have to keep sitting down a lot or avoiding walking. Saying it’s because “my leg hurts” just sounds ridiculous - I almost wish I had a broken leg instead because then I’d have a valid “excuse” for this sedentary life.

And it’s easy enough to say, “You just need to avoid physical activity until you get better.” But when will that be? And how will I know when it happens? I thought I was better today, and then going for a walk ruined it all. I am tempted to stop going to all these doctor appointments because everything keeps coming up negative and I keep spending money to find out nothing.

Does anyone have anything to suggest? Another possible test, a different type of doctor, anything? At this point, I have no pain in my quads, and the entire issue is just that 2-inch spot above my left knee. Right now it’s a sharp, yet throbbing pain. Occasionally it feels numb, almost like there’s a foreign object under the skin. It only hurts after standing or walking for more than a few minutes. Warm soaks in the tub make it worse.

Forgot to add, in case this matters: for the past several weeks, my left knee has been “popping” frequently when I walk. Just wanted to throw that in there in case it was relevant to a possible cause of the pain.

Hey,

I think I can get ya steered in the right way.

  1. Does it burn? I know about the numbness.
  2. Does it hurt much worse if you are standing in one spot as opposed to continually moving?
  3. Does it hurt pushing a shopping cart (this I found out was something which set off that specific part of the body while your arms are extended pushing any weight.

About 2" above your knee and a bit to the left would be your lateral femoral cutaneous nerve LCFN, if you are experiencing numb and burning then I’d say bingo you have a winner.

A neurosurgeon told me something once and I tend to agree now after as many surgeries as I’ve been through. Pain starts at the Spine. You can tend to relieve most pain at the spinal level.

EMG’s are worthless for the LCFN because it can’t go deep enough

How about getting into a pain Dr, or a good neurologist. If you care to PM me your state and which major city you are closest to, I’ll ask my guy who is the best there. He’s knows everyone and travels to speak.

Some options you have are

Try lidocaine cream, or lidoderm patches if you get ANY relief from this then you probably have nerve damage. If you receive no relief, then you have to look for something else. Lidocaine is not capcisin like from the store, you need a script.

Try pain killers see if your PCP will start you on Vicodin, just to see if that helps.

If it helps then you might have your temp solution. For a more long term solution if this hasn’t healed yet, you might be looking at permanent damage and a more permanent type solution.

In order of severity.

SCS or spinal cord stimulator which is implanted in your back and then sends pulses to your leg where it counteracts the pain.

Pain Pump which would pump strong medicine in very low doses to your spine to help deal with the pain.

Lastly would be to sever that nerve and have your leg be numb, but no pain.
Hope something here helps you.

As someone with chronic nerve pain of no known origin, despite many many repeated tests, I certainly sympathize with the intense frustration you’re feeling. Running and biking were major parts of my life, and I felt a deep loss when I had to stop. I can only imagine how you must feel facing the prospect of limited ability to walk.

Eventually I threw myself into a new hobby that I can manage without significant pain, and it has certainly helped me move on. At some point, I transitioned from trying to avoid the pain as much as possible for fear of making things worse (with much detriment to many aspects of my life), to living as normal a life as possible, and dealing with the pain as best as I could.

The only thing I have to add is that, as I’ve been told by a few neurologists, nerve injuries can take a long time to heal, so there’s certainly much hope for you still. How long that is, and if / how long you should avoid physical activity is anyone’s guess. There’s so much doctors don’t understand yet, and at some point you may just need to make a judgement call for yourself, as I had to do.

Wish I could be of more help. The numbness certainly implicates something wrong with a nerve, and the fact that it’s just that one spot might suggest that it’s localized physical damage that could heal eventually (rather than the delightful full body stuff that I have).

Have you considered alternative medicine? I know there’s not much for western studies on it but I’ve had good results with acupuncture for various injuries that were taking a long time to heal or are/were chronic.

Thanks for the comments so far. Maybe it is a nerve issue after all - I assumed that the EMG would show it, but maybe not. I do know of a good neurologist, fortunately, as I was dealing with severe chronic headaches last summer. I went to a neurology practice - a giant office with tons of doctors, and lots of money to burn on advertising. They were not able to diagnose the problem. So I found another doctor at a smaller office, and he was immediately able to diagnose it and advise me on what to do. I just called his office and have an appointment for Friday, so hopefully he can help.

Shawn, to be honest, I have generally not had much faith in alternative medicine, but I may look into it if this doctor can’t help.

Hopefully you get it figured out, pain and no physical activity sucks.

I have a ‘bible cyst’ above my left knee, maybe you have something of the sort that is impinging upon a nerve bundle?

Whatever it is, you need someone to take a look inside.

See if you can get a referral from your PCP to someone who can scope it. If they figure out what is wrong then maybe it can be fixed on the spot, or look for alternative pain routes like the medicines in the previous post.

With meds you can get back some of the activity you have lost.

That sounds like a good plan. It might be a good idea to see a vascular specialist, too. Claudication can cause some of the symptoms you’re experiencing, and if you’re having vascular issues in your legs you want to catch it early for the best outcome.

Most people have already posted what I would say. I do recommend, though, that is you go to an orthopedist or PT to find one who specializes in athletes. There’s a world of difference, IME, when it comes to recognizing the importance of exercise in one’s life.

If I may hijack for a moment…I had arthroscopic hip surgery this afternoon, to repair a labral tear and debride some stuff and correct an impingement. The first ortho I saw said, “Well, no one ever died from a labral tear.” Uh, thanks, I know. The second ortho I saw—an athlete himself and a team doctor for several major sports teams in the Boston area—really listened to what I had to say about how my quality of life has sharply declined since I have not been able to run. It’s like my husband not being able to listen to music, or another person not being able to read. This doctor could not in any way say prior to my surgery whether I will be able to run for sport again, but he did commit to helping me get back to the level of fitness I need. When recommending a place for me to do some follow-up PT, he suggested a couple of places near me that focus on getting people back to an athletic lifestyle.

I hope you get some answers soon—even if you don’t get resolution soon. The not knowing can be crazy-making. I’ve followed your other threads and relate completely to the feelings of loss.

lorene brings up an excellent point. Some doctors (whether by luck, experience with a particular demographic, or just buying into rumors and overgeneralizing) think most of their patients are pill-seekers and malingerers trying to get on disability for the rest of their lives. And the more-easily-falsifiable nature of soft-tissue injuries (versus, say, fractures) exacerbates that problem. If you can work with a sports medicine practitioner, hopefully they will start out more sympathetic to your goals (being able to run and bike again), instead of pegging you as a drug-seeking malingerer whose highest aspiration is walking slowly around your house.

Not that this is *necessarily *what’s happening to you, but it’s a possibility. It definitely doesn’t sound like you’re being taken seriously yet. I hope the new neuro finds it, best of luck.

Has anyone considered compartment syndrome? Specifically, Chronic Exertional Compartment Syndrome? http://en.wikipedia.org/wiki/Compartment_syndrome

I’ve seen people in the millitary get it, and it presents a lot like the symptoms you’re describing. And I, also, think lorene makes an excellent point. A doc or PT who specializes in sports medicine may have more empathy, as well as more experience to draw from.

:smack: I totally forgot about that syndrome. That is an excellent suggestion for the OP.

rachel, I hadn’t even thought of the Pillhead/Malingerer suspicions. My ortho guy was more like, “Can’t run? Can’t exercise? Eh…You’ll live” but you do also make a good point.

An EMG doesn’t always show all nerve problems, as I’ve learned (and by my doctor’s admission). All of my EMGs have come back normal, and I undeniably have something significantly wrong with my nerves. They still test once every year or so to keep tabs on things regardless.

So as you’ve said, it’s probably worth it to check out a neurologist.

I know this is a zombie thread, but as the OP, I wanted to update. I’m still dealing with this issue. After my EMG test came back with nothing, the sports medicine doctor that I was seeing referred me to another orthopedic doctor who had more knowledge about compartment syndrome. After seeing the swelling in my leg, he found it “hard to believe” that the MRI from October had shown nothing, so he ordered another one (he doubted compartment syndrome because my problem is in the thigh). That came back with nothing. Then I had to wait for him to come back from vacation at which point I asked again about compartment syndrome. He finally agreed to let me get tested. Then that came back negative.

He had suggested maybe seeing a vascular specialist, but then asked if I would consider physical therapy. I said I had already had PT from two different places, and both times, any type of movement just made it worse. He suggested I give this other place a try, as they are soft tissue specialists and have expertise in back issues. I just made an appointment. The soonest they can get me in is the 4th, which is of course when I am out of town all week, so instead I’m going in on the 11th. What’s so frustrating is that every time I get shuffled from doctor to doctor, I have to wait several weeks in between because of the time needed for scheduling appointments.

Any other thoughts? The pain seems lessened a bit, and I am able to do a bit more activity, but the swelling is freaking me out. I can see this big lump above my knee every time I change clothes or take a shower, and I know I should put on my big girl panties and get over it, but the fact that the swelled lump is always there is disconcerting. If it was just pain maybe I could deal with it, but the lump keeps reminding me that there is something really wrong and that nobody knows what it is. It hasn’t felt numb in a long time, but there is still pain if I do a lot of physical activity, or have any pressure on my legs - which means, no laying on my stomach, holding things on my lap, or wearing leggings or tights. Massaging the area makes it worse. My left knee has also been “popping” (like when you crack your knuckles) when I walk, but not the right one.

There hasn’t been any numbness there for several months, just pain. To me, it almost feels like something is misaligned - like the muscle or tissue has been pushed or pulled into the wrong position, and the lump is due to part of the tissue sticking out where it shouldn’t be. Also, now I’ve been having some pain on the inner part of my thigh on the same leg, which makes me wonder if the tissue being misaligned is also “pulling” other muscles out of position with it. I don’t know if that makes any sense. Is there any such thing as a treatment where they physically push the muscle into the correct position?

I have heard about “Osteopathic manipulative medicine” and it sort of sounds like what I was describing above about moving the muscle back into place. Is this something I should be looking into?

Any other thoughts?

Forgot to mention, I did see a neurologist as suggested upthread. However, he just looked at all my existing tests and said that based on the symptoms, it didn’t seem to be a nerve issue, but rather a problem with the IT band. He said to go back to the sports medicine doctor (I did, and that’s when she referred me to the other doctor for compartment syndrome testing.)

I have nothing to add for you in the way of advice, but as someone who lives constantly from the pain of working a stand-up retail job with virtually no cartilage left in my knees, and arthritis in my feet and ankles, and numbness from a broken toe, and residual pain from an extremely bad bruised knee, I wonder if this experience has made you think a little less derisively about those of us who use our cars as tools to help us live a fairly normal life? And do you look back at your former (hopefully) attitude with any degree of embarrassment? I don’t ask this to be snarky…I truly would like to know if this very frustrating and painful experience you are enduring has changed your perceptions of others in a significant way? I’ve been doing a lot of contemplating lately on this topic, what with the whole John Edwards trial (and yes, I could explain the connection, but probably in a thread of its own!) and the quoted comment of yours just really stood out to me.

It’s possible a D.O. could deal with this better than an M.D.

Knee damage can result from using too high a gear on a bike. Possibly it could cause harm in other areas. Generally one should have a cadence of 60-100 rpm. Pushing too hard doesn’t strengthen, it injures. Bicycling done properly (high cadence/low pressure)) can strengthen knees.

Tossing out some ideas and that is all:

Acupunture.

A trigger point injection of Lidocaine.

Been tested for Lyme disease?

Good luck!