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Old 01-06-2011, 03:00 PM   #1
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Chronic Leg Pain

I've had chronic leg pain for about 5 years now and was wondering if anyone had any clue on what to do now.

Started with an injury in track when I was 16. I was diagnosed with shin splints/stress fractures in both my legs. I'm a big dude so I guess the running took its toll on me.

Flashforward to 6 months later and I'm working a retail job and the pain is especially bad. I got to doctors and get xrays, mri, bone scans. Nothing ever shows up as wrong or out of place. Even got the classic "you are faking pain because you are depressed".

Then I find a vascular doctor who says my blood flow is not good in my leg. He said I could point my toes out and stop 100% of the blood flow. I had my first compartment release and the pain "subsided" during the recovery months.

Get another job and the pain comes back. Original doctor says he's out of ideas. Go to Chicago which is 3 hours away and have another vascular doctor say that blood flow is jacked up in my knee. He does a surgery to cut the artery in the back of my knee and the muscle there. This does nothing and he doesn't really care.

Now I hear that the University of Wisconsin has a great compartment syndrome doctor. I go there and do pressure tests to figure out that the pressures are indeed elevated. Around 40-50 at rest. He does the surgery one leg at a time and the pain is actually very minimal for the summer after. I manage to lose 50 pounds during this period because I was feeling great and could exercise.

That fall the pain started coming back and affecting my college work. It took everything I had to try and exercise and now I'm unable to work out for more than 20 minutes.

TLR I've had multiple compartment syndrome surgeries and still have leg pain that affects my sleep and everyday life. Gets worse with any kind of exercise or moderate walking. Any suggestions on type of doctor or even what could be happening?

 
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Old 01-06-2011, 06:28 PM   #2
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Re: Chronic Leg Pain

Are you on any sort of pain relief programe, any regular analgesics at all?

Somthing like ER Tramadol plus an antiinflamatory would be a logical starting point, with a low risk of dependence, and there are plenty of other options around.

Might be wroth asking your doctor for a trial, or a referal to a pain management doctor.
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Old 01-06-2011, 06:33 PM   #3
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Re: Chronic Leg Pain

Not on anything because all my doctors ditch me when they don't have a clue. I'm currently attending a Active Release chiropractor who is doing all kinds of stretches and such to my legs to see if that will help.

Thanks for the suggestion on medication. Previously I've been using Vicodine simply because it would help with the pain at nighttime but obviously that isn't a proper solution to helping even just the pain.

 
Old 01-06-2011, 09:23 PM   #4
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Re: Chronic Leg Pain

Do you have a primary care doctor? I'd go and have a talk to him, and say you need some releif from the pain while awaiting an ultimate cure, see what he has to offer
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Old 01-06-2011, 09:40 PM   #5
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Re: Chronic Leg Pain

Welcome to the boards. Actually for chronic Compartment Release syndrome the recommended treatment is Mannitol to decrease pressure. Or a fasciotomy, which is the surgical option which I think you said you've already had. I don't see how anti-inflammatories would work for this type of pain, as it is not bone, joint or soft tissue, but vasciular in nature. The same would probably apply to Vicodin. Have any of your previous docs mentioned this? As for excercise, this increases the pain as opposed to relieving it.

 
Old 01-07-2011, 03:23 PM   #6
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Re: Chronic Leg Pain

Hi, and welcome to the board. I did a bit of research on this problem and it seems that your best bet might be to see a Sports Medicine doctor. ''

Please continue to post and let us know how you are doing and if you get the help you so badly need.

Carol

 
Old 01-09-2011, 03:36 PM   #7
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Re: Chronic Leg Pain

Wilson,
I learned that not to have all the answers is the hardest thing. When you live with pain, but at least you know where it's coming from, it makes you feel better, at least thousands of questions don't run your brain all the time.

I have a girlfriend who was told since she was born for many years in her adulthood that ulcers she gets on her ankle is from poor circulation. She had over 50 skin grafts to "cover up" her ulcers but they still would appear every 3-4 month. On vascular disease Dr after another for years and nobody could tell her why she gets ulcers and why non of the treatments she got wouldn't work. She is not a vein person by any means, but her major question was WHY?
She would be the happiest person to get the right diagnoses.

Finally about 10 years ago, someone recommended her a Dr at John Hopkins. He is vascular disease DR, but also works in a group with Doctors who check patients for genetic diseases, etc.
And guess what? Only in her early 50th finally she was diagnosed with non curable KT syndrome. Only a fistful of people on whole Earth have it, you born like this. So her vascular condition wasn't a disease, KT syndrome was causing ulcers b/c all the symptoms.
In fact, all what was done before for her was harming her condition a lot. For example one Dr put her in Una boot for years and years and her resent Dr said that this didn't do her any good.

I told you this story that you can see how important to know the right diagnoses. Based on my own experience and on my friends experiences who have health issues, I strongly suggest everyone to have couple opinions. This is so important! And not in same area where all doctors know each other. This a DR told me, my dear friend's husband. If you go for second opinion, make sure Doctors don't know each other, otherwise they will never contradict diagnoses previous Doctor gave you. Even if they see it differently, they still will never say "no that Dr is wrong, I think you have something different". I went through this before my spinal surgery only b/c I was so naive back then.
But when I went for my third and more opinions to NYC, I got the right diagnoses finally.
You mentioned couple times "DRs just dont care". This is what I mean. They dont want to dig more to look for something else. But what if you dont have the right diagnoses or you got something else is going on with you now?
In my opinion, you should go with all your ex-rays, reports of surgeries, medical reports from each of your Doctors with diagnoses and procedures which were done for you.
Search for a reputable clinic (we have them all over the country) where people go to be diagnosed and see someone else. Remember, good Doctors never give up on their patients and they dont act like they don't care.
Someone there will take good care of you and will care enough not to leave you hanging in pain.

Best wishes,
Moldova

 
Old 01-09-2011, 04:04 PM   #8
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Re: Chronic Leg Pain

Wow, thanks for all the replies. I talked to my PT and he agreed that I should see a pain management doctor. Also he said that I definitly need to see another vascular doctor because he could see the pain I'm in.

Also I have never heard of that medicine for compartment syndrome so I'm very interested in researching that. If I can get relief without another surgery that would be amazing.

I have had 3 fasciotomies. The first was when they just cut the fascia but the latest they actually removed a part of it.

I just want to say I'm super thankful for all of the responses. I've spent years with people not understanding my struggle of constant pain but still being able to walk. I finally broke down a little to my physical therapist and he actually believed in my issues and I probably wouldn't have done it without all of your great responses.

 
Old 01-11-2011, 08:49 AM   #9
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Re: Chronic Leg Pain

wilson, when you say it affects your sleep, what do you mean by it? explain me please.

 
Old 01-11-2011, 10:03 AM   #10
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Re: Chronic Leg Pain

Quote:
Originally Posted by wilson90 View Post
I've had chronic leg pain for about 5 years now and was wondering if anyone had any clue on what to do now.

Started with an injury in track when I was 16. I was diagnosed with shin splints/stress fractures in both my legs. I'm a big dude so I guess the running took its toll on me.

Flashforward to 6 months later and I'm working a retail job and the pain is especially bad. I got to doctors and get xrays, mri, bone scans. Nothing ever shows up as wrong or out of place. Even got the classic "you are faking pain because you are depressed".

Then I find a vascular doctor who says my blood flow is not good in my leg. He said I could point my toes out and stop 100% of the blood flow. I had my first compartment release and the pain "subsided" during the recovery months.

Get another job and the pain comes back. Original doctor says he's out of ideas. Go to Chicago which is 3 hours away and have another vascular doctor say that blood flow is jacked up in my knee. He does a surgery to cut the artery in the back of my knee and the muscle there. This does nothing and he doesn't really care.

Now I hear that the University of Wisconsin has a great compartment syndrome doctor. I go there and do pressure tests to figure out that the pressures are indeed elevated. Around 40-50 at rest. He does the surgery one leg at a time and the pain is actually very minimal for the summer after. I manage to lose 50 pounds during this period because I was feeling great and could exercise.

That fall the pain started coming back and affecting my college work. It took everything I had to try and exercise and now I'm unable to work out for more than 20 minutes.

TLR I've had multiple compartment syndrome surgeries and still have leg pain that affects my sleep and everyday life. Gets worse with any kind of exercise or moderate walking. Any suggestions on type of doctor or even what could be happening?

 
Old 01-11-2011, 10:05 AM   #11
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Re: Chronic Leg Pain

I had quite a scare this past week. I woke up in the middle of the night with extreme calf pain in both of my legs. It wasn't like a charley horse or anything because the sharp pain was the entire calf and different from a muscle cramp. It's very difficult to explain and something I have never experienced before. It let up enough for me to go back to sleep, but my legs were still a bit sore the entire next day. I thought back and couldn't think of anything I did physically that would have caused this. However, I did travel in the car over Christmas for a few hours. I'm not paranoid about having another stroke, but of course my imagination got the best of me and I started envisioning all these blood clots forming in my legs. I got myself so concerned I nearly cried. So, instead of doing that, I just called my doctor.



The nurses weren't quite as concerned as I was. But, that is probably good. I didn't need a nurse to freak out on me while I was so freaked out myself. She just told me to get to the lab and have my pro time checked, a blood test which measures how quickly the blood clots. She also said if the pain became severe again to call back. She said typically if a clot was forming, both legs would not be affected or sore. Also, my leg would be sensitive to touch, swollen and hot. I didn't have any of these symptoms. So, I just got in the car and headed to the lab.



My blood work turned out to be normal, which means my blood was so thin, it wouldn't be likely a clot was forming. This is thanks to Coumadin, the blood thinner I'm taking. By the next day, my leg pain was completely gone. The whole thing is still strange to me. The only thing I can think could have caused it was traveling. Oh, and a movie I saw a couple of days before that. Avatar (the movie) was great, but be prepared to sit for nearly 3 hours. I remember now, when I was leaving the theater, my legs hurt really bad. I just can't sit for long periods like I could when I was younger. Of course, I don't consider myself old, but older, I guess. My doctor did say I wasn't wrong to call, though, because calf pain could be serious.



He was talking about Deep Vein Thrombosis, which is what I thought I had. I've talked about DVT before, a life-threatening condition caused by a blood clot that forms, most commonly, in the deep veins in the legs. DVT typically causes no symptoms, but in some cases can cause leg pain and swelling in the leg. Where it gets dangerous, is if it breaks loose and travels to the lungs causing a pulmonary embolism.



People at risk of getting a DVT are people like me, whose blood is sticky and clots easily. According to the American Heart Association, other factors include: obesity, varicose veins, major surgery, bed rest, cancer, leg paralysis, pregnancy, estrogen and long-distance travel. As I mentioned before, if you do have symptoms, they would include leg pain (worse when on your feet), leg swelling and warmth or redness.

This is a article I found, hope this will be helpful. God Bless!

 
Old 01-11-2011, 11:36 AM   #12
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Re: Chronic Leg Pain

The sleep part is that the pain is usually greatest at night and I'll be super tired but as soon as I lay down it is impossible to sleep with the leg pain.

Interesting article. I've printed it off and am taking it with me.

I'm going to see a new vascular surgeon on Thursday and the pain management doctor on Friday.

Anyone have any advice for handling the pain management doctor? I'll be taking all my papers and stuff but they usually just blow through them and then ask questions that aren't really pertinent.

 
Old 01-11-2011, 07:54 PM   #13
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Re: Chronic Leg Pain

Hi Wilson. Good luck with your upcoming appointments. You asked for any advice on how to deal with your first pain management appointment and I actually do have a few ideas. I've seen quite a few pain man. docs in the past and I'd have to say that the most important thing when meeting for the first time is to keep an open mind. You may try to "read" the doc by their demeanor, their looks, the kinds of questions they ask, etc. But try not to make up your mind about anything until you've had a chance to discuss your issues. I remember when I saw a pmdoc for the first time and I was trying to figure out if she was the kind of physician who would take my pain seriously and, if so, did she seem like someone who would be willing to give me the kind of strong pain meds that I felt I would need to get my pain under control. I was so caught up with trying to interpret her intentions that I came across as a real idiot! To me the best approach is to give your new doctor a realistic picture of how your pain is impacting your day to day life and describe concrete examples to help him/her understand. Things such as, "I can't drive anymore because I can't ______ (fill in the blanks, obviously) turn my head? Can't step on the gas? Can't sit up straight...because of the pain. I can't work anymore because _____ (can't lift anything over 2lbs, can't sit at my computer because of _______ pain." If you can draw that picture for him/her, then they will have a very good idea of what your particular pain has done to alter your activities of daily living.

The last suggestion I would have for you is to be very, very honest with the doctor about your medical history and what has or hasn't helped give you relief in the past. Be open to any testing the doc might ask you to undergo, unless it is something that you can't afford or have done previously. If you show a willingness to do whatever the doc recommends, he/she will know you are serious about getting some help. Good luck and hope things go well for you! BrittleBones

 
Old 01-22-2011, 02:58 PM   #14
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Re: Chronic Leg Pain

Thanks for the advice on the pain management doctor. She gave me Tramadol which subsequently made me ill for three days and now I'm back on Vicodin. The good thing is she started me on getting ready for Mayo Clinic visit. Hopefully things are moving toward being better.

 
Old 01-23-2011, 09:31 AM   #15
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Re: Chronic Leg Pain

Hi wilson90, have any of your doctors ever mentioned RSD reflex sympathetic distrophy? it causes vascular problems, color changes, horrible nerve pain (which for me is worse at night) I would ask your pain management doctor about it . alot of people with RSD go undiagnosed or wrongly diagnosed for years. look it up on this site or google RSD or complex regional pain syndrome it is the same thing they just changed the name.
kelly

 
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