Discussions By Condition: I cannot get a diagnosis.

swollen legs, ankles, feet

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Kim3541
  • November 16, 2008
  • 06:15 PM

I have had swollen feet and ankles for a very long time. It hasn't been until recently that the swell so much I can not wear shoes. They were burning so bad on the bottoms also. My RA Doctor upped my Gabapentine to 2000mg per day. it has helped with the burning. They were burning and sharp needle pains all the time, but got worse at night. The swelling would some times go down a little over night, but then as soon as I get up and walk or stand for a few minutes they start to swell up again. I am 46 years old, I have fibromyalgia. I am very over weight 350lbs, 5'10". I have been off of work for over a year now because of the pain all over. I have a hard time standing on hard surfaces, especially without shoes. I will be in the kitchen for a while the pain will go from my feet to my knees then to my lower back. When it gets that bad, I can hardly go up or down steps. I understand that weight as alot to do with these kinds of things. But it started before I gained the weight. My feet started to hurt then they just got worse where i can't walk like I used to. I would walk from 1 to 3 miles a day. Used to weigh 150 lbs. I am in the process of having the weight loss surgery to see what that will do. But since I had this before I gained all this weight. not so sure it will get rid of the swelling. I have had all the heart tests, kidney, gallbladder, liver, neuropathy test, test for blood clots. All fine. I take lasix twice a day, doesn't change the swelling. There are some days, maybe every few months I wake up and almost all the swelling is gone. But when I get up and move around or just stand in the shower they start to swell. I have given up. I am on long term disability from work. Not getting a lot of money, can't afford more tests that lead to nothing. I have 5 dogs that I can;t go out and play with, I want my life back. Please can you help?:(

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9 Replies:

  • I have a question. When the swelling started many years ago, were both legs equally swollen?
    Felsen 510 Replies
    • November 16, 2008
    • 06:57 PM
    • 0
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  • It actually all started with my arches in my feet, they hurt so bad. I had supports made, that helped for a little while, then it quite. couldn't find anything to help went to 3 different foot doctors. The swelling started in both ankles at first it was worse in the left at first, now it is the right foot. Sometimes they swell on the tops of my feet, sometimes on the bottoms, sometimes when the swelling goes down, It still swells around the ankle bone, looks like a baseball on both ankle bones. Do you have any suggestions? I have tried just about everything.Thanks.
    Kim3541 5 Replies
    • November 17, 2008
    • 04:19 AM
    • 0
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  • I am not convinced that my suggestion is right, but it might be worth a shot. I am thinking of some kind of problem, like an obstruction, in your venous system. There is a condition called May-Thurner syndrome. It is when the right iliac artery compresses the left iliac vein against the spine. This causes the blood to congest in the left leg because it can not normally pass the compression on its way back to the heart. It dos not necessarily results in the pain at the compression site (if it does it gives a lower back pain), most often it causes pain or swelling or both in the left leg, sometimes in both. If you have a compression like this, after a while your circulatory system is trying to develop alternative veins. They are called collateral veins. Most often there are transpelvis collaterals (horizontal ones from left to right in pelvis), but some patients can develop them near the spine or even inside it. Then it can give pressure on nerves and give numbness and tingling sensation in legs. Another typical symptom is ambulating pain, the pain moves around depending on where the pressure is high at the moment. This condition is vastly underdiagnosed. It is impossible to discover with ultrasound and even difficult to discover with venography (phlebography). The only certain way to discover it is by means of intravascular ultrasound (IVUS) where the probe is inside the vein. The best research has been done by Neglén and Raju in Jackson, Miss. The treatment is to put a stent inside the vein at the site of the compression. The typical patient is a young – middle-aged woman, previously healthy where the doctors have not found other explanation for the symptoms. Even if you wouldn't have the typical compression of the left iliac vein, there might be something as high as vena cava. If there is some kind of blockage of your venous return, it is at the level of your waist, so it is not enough to send you home after an ultrasound of your legs. One must look higher up, preferably with IVUS. Do you have any signs of varicose veins? Are you in US?
    Felsen 510 Replies
    • November 17, 2008
    • 07:33 PM
    • 0
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  • I live in Topeka,KS. I do have a few vericose veins, not many though. On this tingling or numbness, If I sleep on my back which is very rare, sometimes one of my legs becomes very numb. One time I didn't know it was numb until I went to get up to let my dogs outside. It was so numb that I had to walk (or drag) on the top of my foot until the feeling came back. If I sleep on my back sometimes both of my legs become numb and cold. Does this condition also affect other areas. If I sit in certain chairs (usually hard chairs) it makes my back very stiff and sometimes it does something that goes up into my ears making it feel like I am under water or have ear plugs on.I do have problems with my neck also, had a wreck when I was 16, I couldn't turn my head tot he left for the longest time. I have been to Doctors, Chiropractors, had MRI, Botox shot into a muscle in my neck, x-rays, therapy, nothing works. Do you think maybe the thing with my ears has something to do with this? Not sure how, because it does it when sitting in a hard chair for a while. Thank You for your help. I do appreciate it- gives me some hope.
    Kim3541 5 Replies
    • November 18, 2008
    • 09:22 AM
    • 0
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  • Hi Kim3541,You have been over "medicalized" By that I mean.. everyone has been and had a "shot" at you medically.. What you are suffering from is NWS "syndrome".. NWS.. aggrivated by over medication.. Never Well Since. and it has taken toll of your body and your health as a whole.. (see my other posts for more on that subject) .. OK now we have got that out of the way.. what can you do.. That is the question here.. You MUST recover your health.. sounds easy .. it is not.. but it can be done.. I tell my patients that for every year since you can remember being sick.. it will take a month for every year to recover. The body as a whole is designed to recover and regenerate good cells growth when given the right environment and the circumstances and nuritional intake to regenerate and repair itself.. but unfortunately you are a "classic" example of NWS.. and that you are over medicated.. and that you are tired in body, mind and spirit right now.. You have no reserves left for recovery and that you feel that you are at you "end of the rope." So what is my next step you are saying right now.. I need more information and symptology about the life of Kim3541 to better understand the recovery route.. Skyhighnemo@yahoo.com
    Skyhighnemo 22 Replies
    • November 18, 2008
    • 10:20 AM
    • 0
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  • If you have any kind of venous outflow obstruction in your iliac or ovarian/renal veins or vena cava, it can not give symptoms as high up as in your neck. This must be something else. But the numbness in your legs in supine position can very well be, especially since you’re overweight. The weight of your abdomen would compress your veins even more and force the blood through the collaterals along the spine, which gives numbness and tingling, because of the pressure on nerves. Sitting on a hard chair can also diminish your venous outflow. You need a complete evaluation of your venous outflow in the iliac, ovarian, renal veins and vena cava. If you won’t get help at home, I suggest a trip to Jackson, Miss. Or you can ask your local vascular surgeon to confer with Peter Neglen. Because if this is the cause, there is effective treatment. Please let me know if you have any other questions and please post again and tell us how it goes. Good luck!
    Felsen 510 Replies
    • November 18, 2008
    • 06:33 PM
    • 0
    Flag this Response
  • I have had swollen feet and ankles for a very long time. It hasn't been until recently that the swell so much I can not wear shoes. They were burning so bad on the bottoms also. My RA Doctor upped my Gabapentine to 2000mg per day. it has helped with the burning. They were burning and sharp needle pains all the time, but got worse at night. The swelling would some times go down a little over night, but then as soon as I get up and walk or stand for a few minutes they start to swell up again. I am 46 years old, I have fibromyalgia. I am very over weight 350lbs, 5'10". I have been off of work for over a year now because of the pain all over. I have a hard time standing on hard surfaces, especially without shoes. I will be in the kitchen for a while the pain will go from my feet to my knees then to my lower back. When it gets that bad, I can hardly go up or down steps. I understand that weight as alot to do with these kinds of things. But it started before I gained the weight. My feet started to hurt then they just got worse where i can't walk like I used to. I would walk from 1 to 3 miles a day. Used to weigh 150 lbs. I am in the process of having the weight loss surgery to see what that will do. But since I had this before I gained all this weight. not so sure it will get rid of the swelling. I have had all the heart tests, kidney, gallbladder, liver, neuropathy test, test for blood clots. All fine. I take lasix twice a day, doesn't change the swelling. There are some days, maybe every few months I wake up and almost all the swelling is gone. But when I get up and move around or just stand in the shower they start to swell. I have given up. I am on long term disability from work. Not getting a lot of money, can't afford more tests that lead to nothing. I have 5 dogs that I can;t go out and play with, I want my life back. Please can you help?:(I have one question????? Have you ever or are you on the medication lyrica??? If so one of the side effects is swelling of the feet....I know from first hand..I was prescribed this drug for nerve pain in my shoulder and neck and low and behold I ran to the ER witrh swelling to my feet,ankles and legs.....due to the lyrica....
    Anonymous 42,789 Replies Flag this Response
  • Yes, I have tried Lyrica over a year and a half ago. It made me sleepy all the time. And it would make me gain 10-20 lbs. in a week. My Dr. had me on it long enough for me to get overly obese. I ended up having the lap band surgery because of it. But when I had the surgery they put cuffs around my legs so I wouldn't get blood clots. When I woke up the swelling in my legs was gone, and has not come back. But the swelling and the burning and now just plain pain is still in my feet. They are thinking now- it might be the nerves in my back, besides the arthritus in my back that is causing the pain. So I am using a Tenns Unit, it helpes with the pain for a little while. Which is so much better than none at all. At least I can walk a little farther now. I thank God for that. I have one question????? Have you ever or are you on the medication lyrica??? If so one of the side effects is swelling of the feet....I know from first hand..I was prescribed this drug for nerve pain in my shoulder and neck and low and behold I ran to the ER witrh swelling to my feet,ankles and legs.....due to the lyrica....
    Anonymous 42,789 Replies Flag this Response
  • I have one question????? Have you ever or are you on the medication lyrica??? If so one of the side effects is swelling of the feet....I know from first hand..I was prescribed this drug for nerve pain in my shoulder and neck and low and behold I ran to the ER witrh swelling to my feet,ankles and legs.....due to the lyrica....Kim,I have said before and I will say it again, you have been over medicated. Once you stop the medication, your liver will start healing. Once that happens, start taking Chlorella. Take 6 times 250mg tablets every hour.This will help to detox your liver and body. Do the research. Find out what you are taking. Drink plenty of pure clean spring water each day. Do the research. The best patient is an educated patient. Most doctors don't want you to know more than them. Your drugs are not working for you. Do the research. Detox your body. Do the research.. I am sorry if I seem like a broken record, but this is your health and your life., so do the research. Sky..
    Skyhighnemo 22 Replies Flag this Response
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