I have unmistakable, significant swelling of my feet and legs. Balloon feet and very swollen legs. Walking is very difficult and tight, because of the swelling.
It is not, of itself, joint pain, which of course I had associated w. Lyme.
My LLMD said something I could not understand at the time about it - all I can remember is that I thought he said it had something to do with the nerves (?) and the bringing out or down of toxins.
Could that be right? I asked him to put it in my PCP's report, but I don't have that.
I am on a mild diuretic to get the fluid down.
But I am still balloon feet and swollen legs and have a hard time walking for the tightness.
It had happened while I was on an abx break. I have since re-started abx (he is building me back up slowly) but if anything the swelling has increased.
All other tests my PCP did (thyroid, diabetes, kidney etc are normal) and my LLMD said it was unquestionably a Lyme profile.
What is going on? Anyone else have this?
I will do an archive search. But I am a little freaked out and would be grateful for replies.
With many thanks - and warm wishes to all.
Posted by blackbirdsings (Member # 7972) on :
I'm SO sorry you are going through the swelling issues right now-I have a version of this and find it to be miserable and scary. Is your edema pitting or non-pitting? When you press your finger into your leg, does it leave an imprint (like pressing on bread dough) or does it go right back to shape? If it goes back to shape it is non-pitting.
Diuretics do nothing for me and actually make my situation worse because I faint, and the loss of fluid makes it worse for me. No doctor has really said what it is, but now I am understanding it to be lyme and co-infections. I am waiting to see a LLMD. I have been started on a low dose of doxy, but find it VERY promising because the dose is lower than what is really needed to treat lyme, but it is helping. My edema did nothing for days and is slowly going down every few days. As it goes down I feel better and better-not normal yet, but better. For me, the more swelling there is, the worse all my other symptoms are.
I have had others with lyme explain to me that is is "normal" for part of the disease. I hope yours calms down once your antibiotics build back up. My legs have had odd buzzing/electical/chilly sensations as the edema has been going down. I think it might be the bugs, but am kinda lost on that.
Mine gets really severe to the point I have tree trunks and you are unable to see bone...I'm a tiny person, so its really horrible and uncomfortable. As the edema is going down on me, my clothes are getting to be far too big.
I don't know if this helps at all, but I am still a bit of a newbie. I am sure the others will be able to offer more words of wisdom. Good luck!
Posted by mbroderick (Member # 5220) on :
I have this, as well. Diuretics don't help and I have been told that it is, in fact, a Lyme symptom. The less you do, the better you'll feel, at least that's how it works for me. My ankles are swollen and I have a lot of pain in my feet, which makes walking difficult. My fingers have also swelled and feel like tight rubber bands. Anti-inflammatory herbs have helped, but I've only been taking them for about 6 weeks. Sticking your feet and ankles in a tub of epson salts feels better, as does a heating pad, but doesn't offer permanent relief. It just may be a long process with antibiotics. I'm also taking something called Zyflamend (TID Health) which is supposed to be very effective.
Marian
Posted by liz28 (Member # 4946) on :
Hi. I did have that the whole time I had Lyme. It's gone away completely with exercise.
Posted by Carol in PA (Member # 5338) on :
My best, Melanie
Posted by dmc (Member # 5102) on :
You can count me in the swelling group. The more stationary I am the worse it gets.
Posted by cindy_leigh (Member # 3514) on :
I get it too. Pitting edema over the inside ankle bone. Have had cardiac workup, don't have heart failure, etc. One quasi LLMD referred to it as synovial fluid, it also popped up bad with plantar faciitis. It was worse when my lyme was worse, now it's not as bad.
My hands/fingers also swell, mostly with exercise. Ex. walking 5 miles or so, and if I've got a backpack purse on, fingers well like sausages. Having the backpack purse on puts added constriction on the upper arms/armpits and makes it worse.
My ankles swell MORE with exercise, and the edema goes down with elevation/rest.
Posted by Christine202 (Member # 6158) on :
I would definetly get this checked out to rule out other problems....
If nothing is found then it could possiby be from blood pooling to your legs... Many Lyme patients such as myself also suffer from Dysautonomia which is a disruption in the autonomic nervous system.
In my case I can have up to 60% of my blood pool to my legs when I stand....
And I get water retention as well.
I have started some new altherative treatments that so far have been useful...
One is to stay hydrated.... I drink at least 1/2 my body weight ( usually double) in water... I add 1/4 tsp of celtic sea salt to the mix for mineral absorption...
I have noticed that it has helped with the water retention quite a bit.
I know when you feel bloated the first reaction is to stop drinking, but its actually the worst thing you can do....
Anyway, good luck, I hope you can rule out other causes, and feel better. Posted by DolphinLady (Member # 6275) on :
The light beam generator by ELF labs is very helpful for edema. If interested do a search on the net for more info. However you are wise to try to understand the root cause.
Hope you get answers and relief soon.
Posted by Soleilpie (Member # 8481) on :
I was just wondering if any of you also have high blood pressure along with your edema. I'm curious because my mother was just diagnosed with Lyme (after 13 years of with a MS diagnosis)and my dad who takes care of her around the clock has massive edema in both his legs. He too has legs that look like two tree trunks. His doctor said he has high blood pressure and was prescribed a diuretic, which doesn't seem to be doing a darn thing. I just wonder if it's more than just high blood pressure for him and curious if others on this board are having the same experience.
Posted by June (Member # 8661) on :
I've had swelling in my thigh (first one, then another). It goes into my shins sometimes, but my feet don't swell much. The veins on my feet are distended, though, so I've had numerous sonograms to check for DVT, but nothing was found.
It started with a fairly small bag of fluid under my ankle bone. I don't see it improve with anything other than exercise, and elevating legs a few times a day. Drinking fluid has helped too.
Best,
Posted by sandygf (Member # 3516) on :
I also have the edema, around the inside ankle bone area. When I push in with my finger it leaves a deep dent ...pitting edema.
My Dr. says it is somewhat common with Lyme. It really scares me, makes me think one of my body organs is failing.
I did notice that the edema started right around the time my blood pressure started being high. Not sure if there is a connection.
I do know that drinking water seems to help get rid of the fluid. I am also on a diuretic.
Sandy
Posted by TerryK (Member # 8552) on :
You may want to check into lymph edema and try compression stockings and some of the treatments that they use. It would be wise to be evaluated by your phsician for lymph edema (you may need to see a specialist)because you can get infections if that is what you have and you will need to be under treatment for that type of edema.
I have overall edema rather than in the legs. It is non-pitting. I also have the pooling syndrome which is part of dysautonomia and a low blood volume due to a low red blood cell mass. This is all associated with orthostatic hypotension which is related to neurally mediated hypotension. The hypotension and low blood volume are related to lyme according to a paper I read by I think Dr. B.
Some types of fluid retention are caused by leaky capilaries. I notice the fluid retention is very responsive to my level of hydration which probably means that the blood volume is very much tied to the fluid retention.
I won't go into further detail because it sounds like yours may be different in that it is in the legs and not overall although if you've gained a lot of weight or have large fluctuations in your weight you could be having overall edema as well as in your legs.
Diuretics don't help mine at all and tend to make it worse. As mentioned already, drinking lots of pure water is very helpful. Sodium tends to cause fluid retention in some people but not for me because it expands blood volume which is what I need to do in order to keep fluid off. So, I'd be very cautious and keep a close eye on your weight if you plan to use much sodium. If you gain more than 2.2 kg in a day then you are retaining fluid and you should try to figure out if increased sodium is part of the picture because it may or may not be related.
Things that aggravate mine (these may or may not apply to yours)
heat (warm environmental temps or a warm bath/shower or anything that dilates the capillaries)
dehydration
allergies
carbohydrates - causes bb to grow
sugar - causes bb to grow
being upright too many hours in a day
stress
candida infection will cause it to get much worse
Things that help - some I use, some don't help me but may help you.
2 L-glutamine and 1 tyrosine on an empty stomach I have no proof that this will work for anyone. I used muscle testing and found that it helps me dump fluid when I am swelling a lot. I have no clue if it would do anything for anyone else.
anti-candida treatment if that is a problem
staying out of the heat
putting feet up and resting
watch sugar and carbs
Serrapeptase I'm just starting a trial of this as it is purported to be helpful for fluid retention.
I am not a medical professional so you will want to check this information out with your doctor or use at your own risk.
I recall that after the birth of my daughter I had a LOT of overall fluid retention and other lyme type symptoms (didn't know that's what it was at the time). I had edema for several years and nothing helped, got pneumonia, went on extended antibiotics that made me very ill. After the antibiotics I lost all of the fluid and had a remission of my symptoms for a few years.
I'll be seeing a LLMD soon, hopefully I'll be able to get rid of some of this fluid with treatment. It's been helpful to hear that edema has been resolved for others after treatment. maybe there is hope after all.
Regards, Terry
Posted by Foggy (Member # 1584) on :
Do a search on this. There was another Lymie who had this problem in the fall. I think their MD suspected it might be related to adrenal fatigue and a Cortisol problem. AF seems to be common in Lymies. If I recall, a ACTH cortrostym test is done to evaluate this condition.
Have you had this test? Was your fluid intake/output uniform prior to starting the diuretics? You could mention this to your MDs.
Posted by Monica (Member # 224) on :
I have this as well although thankfully it does not make my already difficult walking any worse!
My LLMD asked if it hurt (and I don't mean the uncomfortable feeling of skin stretched). It doesn't. He was not concerned in that case.
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