Hi, I am a 28 yr. Old woman who is going through a bit of a scary time right now. I'm not sure what's wrong with me but i'll put all my info out here & see if anyone has any ideas... About a year and a half ago I developed some sudden pain in my left foot and after a few days it became swollen at the base of my toes and the top of my foot. That's all. After about a week or so the pain went away, but the swelling has never gone away. It's always swollen, but not all that bad. I went to my family physician and he suggested that maybe I had a stress fracture and ordered a bone scan which showed nothing. I visited the foot Dr. And she pretty much said the same thing and just suggested that the swelling would eventually go away. Almost a year later I visited the mayo clinic and the foot Dr. There seems to think that I have mild lymphedema. He ordered x-rays and an mri that showed nothing but a clear cyst in my big toe (which at the time of onset of pain was having a little crisis- my toe nail was shedding and lifted from the skin and almost came all the way off. It has since grown back but is still a little lifted and a little discolored.) anyhow, this Dr. Referred me to a vascular Dr. Who also seems to think that it's mild lymphedema but thinks that the sudden onset and pain to go with it is strange. He ordered tests to make sure that I didn't have any blood clots or anything. And a ct scan of the pelvis to make sure that I didn't have any tumors or anything. The scan came up fine, but noted that I had some slightly prominent (1cm) mesenteric lymph nodes and increased density of the central mesentery. And that findings may be due to inflammation changes, although early lymphoma could have a similar appearance. He assured me that he really didn't think I had anything to worry about, and that it is probably some sort of virus (even though I hadn't been sick), but had to refer me to a hematologist / lymphoma specialist. This Dr. Really put me through the testing with all types of blood work, urine test, another ct scan of the pelvis / abdomen and chest and a pet scan to rule out cancer / lymphoma. (by the way... These scans were done 2 months after the first ct scan) the pet scan showed no evidence of cancer or lymphomas. Bloodwork came back fine, but the ct scan showed the mesenteric lymph nodes, a few under the armpit and scattered ones here and there but none over 1 cm. And none in the front of the chest. It also showed an enlarged spleen. The only other thing that they made a comment on was that during the pet scan, my left ovary lit up a bit I guess and that I have a clear cyst on that ovary, and the radiologist said that it was probably just normal menstrual changes even though I was not menstruating. I just had a pap done and it came back fine. I feel healthy. The only thing that I have noticed in the past months is that once or twice a month I notice some aching for a day or so in my lower abdominal area and maybe a little back ache. I haven't been sick at all this year. The only thing that I had going on was some pockets in my tonsils that had a lot of the white cheesy-like stuff and that was between the scans. The hematologist has scheduled another ct and pet scans in another 3 months. I visited my vascular Dr. The other day and he is referring me to an infectious disease Dr. To see about viruses or whatever. Any ideas that anyone would like to share would be greatly appreciated. I'm just really worried.
Wow! I have the same exact foot problem and it began with an unexplainable onset of pain about 18 Years ago!!! The pain went away within a couple of days, but the swelling (pitted edema) has never gone away. It is better sometimes, worse sometimes and doesn't really cause pain, just discomfort when it is very swollen. I also went to lots of doctors and had lots of testing. They could never find anything wrong. Because it was only one foot (the right for me), they didn't seem overly concerned. I have just learned to live with it. Compression stockings help when I travel and have to sit for long periods. Also, taking a couple of aspirin before and during times when I know it is going to swell helps. Let me know if you find out anything else about this strange condition.!!
I suffered from these exact symptoms. after 6mos. of incorrect diagnosis I visited a Vascular surgeon. He saved my legs. Instantly upon examination he said, "I dont have to do the test (ultra sound pen thingy). This is severe lymphatic overload caused by Chronic Veinous Insufficency. *HINT* should you hear this anogram P-A-D run screamin into the night. Your Dr. hasnt got a clue, just a good grasp of the alphabet.
It is genetic in general. It can be caused by life style. What it is, lymphatic fluid is not being properly being returned to the system and is pooling in the lower extremities. Mine actually split the skin and a amber fluid would leak, LOTS of it.
You are going to end up with your legs elevated from several days to several weeks. You'll need a PROTIME/INR and to be on the alert for blood clots. I ended up with DVT/PE, IT HURTS!
STANDING STATIC FOR LONG PERIODS can bring this on. The layman interpertation the little valves in your veins in your legs have collapsed. While managable there is no cure.
re lymphedema and cysts: Suggest studying the many types of cyst-forming filariases. Filarial infestation can also clog lymphatic channels and vessels when well-established. Vector is any number of tiny parasitic wasps (look like fruit flies when flying, but they're not) and mosquitos. Filaria (many,many more types out there besides those which cause African elephantiasis) are, on visual inspection, are just a bunch of "fibroblasts" that your own body makes, right? Sorry--WRONG. They are very likely the pathogenic organism causing most of the "auto-immune" chronic inflammatory diseases we see today.
As an aside, it took 20 years of study to find the causative organism in Lyme Disease, a chronic inflammatory disease which almost always progresses to
an auto-immune condition called rheumatoid arthritis. that causative organism is borrellia bergdorfii, a rickettsia-like bacterium. Another rickettsia-like bacterium just happens to be carried by many of the most popular disease-causing filaria--its name is WOLBACHIA.
It then seems to me that after 20 years of research of Lyme Disease,they found the rickettsia, but THEY MISSED
THE FILARIA IN THAT ONR PATIENT's lymph node. The rickettsia can dump out of the filaria if the patient is on certain antibiotics which kill the filaria. Since this bacteria is an endosymbiont carried within the filaria's GI tract,if the antibiotic kills the filaria,
the GI tract empties out and the lymph node biopasy needle picks up the bacterium.
Check out all the chronic inflammatory disease like RA, Lupus, Raynaud's, Sjogren's Syndrome,
chronic fatigue syndrome, fibromyalgia, and most of all,
current pathology studies of "white cloth pannus" found
over the knee in RA knee-replacement surgery patients.
I am fairly convinced that the fibroblasts (so-called) which form that substance are filaria and the shed skins of filaria. So be on the lookoput for the word Fiibrosis. Affects the eyes also (ophthalmic filariasis). The entomologists do not communicate with the doctors (and vice-versa),so don't expect them to know a thing. They simply are not taught it in medical school. Big article in January 2010 Scientific American magazine, titled "Neglected Tropical Diseases . . ." (can't remember the full title at this writing).
I am 25years old have chronic lymphdema in my feet and legs have been my right foot swelled up when I was 16 and then when I was 19other foot swelled horrible pain when first came about then I was fine went to the doctor got shot and no pain but feet still swollen seen lots doctor say healthy just bad lymph nodes just last year at the age of 25 in Sept 09 got staff infection horrible pain in hospital for week was getting worse going up leg since then been in hospital 4times just seems like wont go away I know how ya feel horrible pain every time just seems to get worse donÃ¢??t know whatÃ¢??s going on wish could find a cure tried the socks and elevating kind of just gave up a little donÃ¢??t have that great insurance to keep researching and think it going to bye hard to keep job if have to be in hospital at least once every two months for staff infection. arg help lol sincerely josh
I have lymphedema in both arms, both legs, head and neck..well everywhere. I didn't know this until I was working in a converted factory and the huge air-conditioning unit was blasting right on my cubicle. It was freezing. Remember, lymph fluid just just below the skin. I kept gaining weight and feeling pain. I gained 11 pounds in one weekend (hospital scale, same one on a Friday and then a Monday). I finally diagnosed myself and asked for a consult with the vascular surgeon. The "gold standard" test is a lymphoscintigraphy. It hurts like hell, I had two on each limb. I think that now they depend more on MRIs.
Since I have LE "all over", the compression garments tend to do more harm than good. They just push the lymph to another place I don't want it. The treatments of massage and wrapping were useless.
I found the very best thing to do was to use gravity to my advantage. I don't sit when reading or watching TV. I lay on my bed so that the fluid can gradually level itself out and my body has a chance to get rid of the fluid at a pace it can handle.
I think my mother had this, too. She spent most of her time when she was older in a hospital bed at home. She walked doubled-over and her back end was in the shape of the bed. The fluid will go to the lowest point, that's just the laws of fluid dynamics. Be careful of your positioning.
I am not too discouraged. I am the smallest "all over" LE patient I know. Most are about 600 lbs.
I see people all the time, though that I can see have LE. It is a much more common problem than is diagnosed, I'm sure.
I think that the symptoms of fibromyalgia are really those of LE. The LE collects and fibroses at the points above and below the joints, exactly where doctors press when they are checking for fibromyalgia.
The "dorsal hump" on both the top of the foot and hand are almost a definitive sign of LE. The pain comes from the fibrosis. Remember, keep away from cold and too much heat will make the fluid much too fast and can be painful. Remember, fluid dynamics and physical causes and cures. This isn't a "medical" problem, it is one of physics.
Warning! I was in pain management and using Oxycodone for a couple of years by not paying attention to the above. My upper left arm was so painful I couldn't stand it without the drugs. Then one day I noticed what I was unconsciously doing - rubbing my upper arm above the elbow. When I stopped doing that, the pain went away. Massage is good for helping end some of the fibrosis, your real enemy. Just make sure you do it gently and thoughtfully.
In LE your gym teacher will help you more than your doctor's prescription pad.
Best of luck to everyone with this frustrating condition (notice I didn't say illness?).
I've had chronic swelling in my right foot for about 2 years now - I used to do ballet and I also endured a bad injury (on a night out, admittedly) where I got trodden on with an awful stiletto heel and another time just with a regular shoe. The swelling started off really bad (not ankle, just foot) and compression marks were left in my skin when it was pressed. Since then, I've seen loads of doctors, had physiotherapy, worn insoles in my shoes, avoided completely flat shoes and high heels, and tried exercising more frequently. The swelling tends to fluctuate, but generally it is a LOT better than it was when the injury first occurred, but has never completely gone down. Been to see a vascular surgeon recently, and he thinks its mild lymphedema and has suggested that I wear a compression stocking daily. I'm only 21 and I'm really concerned that it's going to get worse - it hasn't over the last 2 years and if anything has got better but I'm just wondering if anyone has any suggestions on how to reduce the swelling and keep it reduced. I've had to stop doing ballet as well because the strain tends to increase swelling - does anyone know if with the use of a compression stocking, it would be possible for me to give it another go? Really seeking some advice! Thanks, Sarah
I've had swelling in my feet since having things dropped on them about 10 years ago. I thought my foot was broken. X-rays and ultrasounds were done. Nothing was revealed to be wrong. I did not pursue the issue until recently when I was diagnosed with primary lymphedema of the lower limbs. Treatment is compression stockings that immediately reduced my ankles by 3/4" ,elevation, lotion on my legs to prevent cracking, and manual draining that I learned from a physical therapist. My case is mild so far (and hopefully will stay that way). The doctor who diagnosed me was a podiatrist and is a great doctor. I can now wear many of the shoes that I couldn't wear for the last couple years, but with compression stockings, not all shoes/styles look good. I am 50, so I have fewer fashion issues than you would have at 21. Compression stockings, though, really work well for me.