New member seeking information on edema and nerve problems

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New member seeking information on edema and nerve problems

Postby Dusk » Mon Jul 05, 2010 6:16 pm

First of all, this and the wiki are wonderful resources. I've been making much use of them in the past four months.

I'm in the midst of trying to get a diagnosis for an undiagnosed illness that prominently features chronic edema. Until my money ran out (actually, well before that), I had dozens of medical tests done on me - blood tests, urine tests, MRIs, CT scans, X-rays - and everything has turned up negative. I'm the healthiest seriously ill person in my town. :)

The first doctor to examine me in depth - at the local hospital - thought I might have lymphedema. (I gather I'm lucky to have had a doctor who had even heard of that condition.) My primary care physician, while he wants me to see a lymphedema specialist, thinks it's more likely that I have idiopathic cyclical edema. As for me, I'm worried that I might have another illness (such as some sort of bacterial infection or immunodeficient disease) that just happens to have swelling as its symptom.

While I'm waiting for my partner to get a second job so that I can actually afford to see a specialist in lymphedema (we don't have health insurance), I thought I'd ask you folks about a manifestation of my illness that is puzzling me, because I haven't seen it mentioned in any of the multitudinous symptom checkers I've looked at during the last few months.

Some background first: The edema is worst in my left pelvis but is affecting every part of my body. I can't stand, sit, or lie down without the swelling occurring somewhere. Except in my left pelvis (where the swelling is always present), the swelling follows the course of gravity. When I'm standing, it pools in my calves (at least till the swelling gets so bad that it reaches higher). Lying down and raising my legs - which I tried at first, to disastrous effect - only sends the swelling away from my legs and into my upper torso, arms, and head. The one thing that seems to slow the swelling down (not prevent it altogether) is activity, so I'm having to almost constantly walk throughout the day. As I say, the swelling never goes away entirely in my left pelvis, and my left pelvis keeps sending it to other parts of the body (that's what it feels like, anyway; I know that I could be misreading what's happening). But I wake up feeling somewhat better after sleeping.

Whenever the swelling pools in some area of my body, I get a buzzing/tingling sensation, like pins and needles, particularly if there is pressure upon that part of the body. So, for example, I get a buzzing sensation the moment I sit in a chair (since the swelling always remains in my left buttocks), which increases the longer I sit. I eventually get a buzzing sensation in my head if I lie down (because the swelling pools there eventually), which makes me very dizzy and drowsy.

The pooled areas of swelling - especially in my left pelvis - also can have hypersensitivity (hyperesthesia), so that light touches cause pain - both inner pain and on the skin - and trigger more swelling. As a result of the hypersensitivity of my left pelvis, I've been having to sleep on my right side, which has spread the swelling over to that side of my body. (Initially, the swelling was mainly on my left side.)

I also had more severe nerve problems - spontaneous twitches and jerks - in March and April, when the swelling was at its worst (I was trying to lie down all the time then, which was so not a good idea), but the twitches and jerks have mostly gone away now that I'm active throughout the day, without any sign that my body has experienced permanent nerve damage. Likewise, the buzzing/tingling/pins and needles sensation *only* occurs in the parts of the body that are swelling - never when the swelling goes away.

Have any of you experienced a buzzing/tingling sensation or hypersensitivity? Or other nerve problems? Or have you heard of such things in connection with various forms of edema?
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Re: New member seeking information on edema and nerve proble

Postby patoco » Tue Jul 06, 2010 9:49 am

Hi Dusk

Super welcome to our family here. :)

There are a couple ways that we might experience this tingling sensastion with lymphedema. Many of the newer patients, especially it seems with arm LE often have a strange tingling type sensation (needles and pins) either just before the LE begins in earnest or when it frist starts to swell.

With long term lymphedema, the tissues change texture and become very fibrotic (hard). As that happens, the swelling can and does compress both the nerves and the vascular system. When it begins to compress the nerve oyu can have the lingling sensation, but also you generally would start experiencing a great deal of pain from the compression on the nerves. Actually, the pain can be so severe that many of us have to be on prescription pain meds.

I'm not aware of any form of lymphedema that could be associated with the dizzyness though. That sounds like you may have fluid in the inner ear as well.

We do have a comprehensive page on edema:


It fairly packed with info on most conditions that have swelling as a part of gthe condition. You may want to look at thiw page and see if any of it can help, either inform you or direct you further.

Dusk, I was wondering - can you pinpoint when all this started? Did you have an injury, infection, illness of any type? Also, how long have you had this swelling.

If there is a certified lymphedema therapist near you, call them up and atlk to them. Let them know that you don't have insurance at the moment and is there any way they would see you for that initial visit. So many therapists are quite grascious and do that becauswe they care.

Also, in all those tests, did they ever do a lymphoscintigraphy test?

Lymphoscintigraphy ... intigraphy

This is a great page that explains the test and what they are able to do and see in it.

BTW, there is also a condition called Lipedema in which the skin becomes hypersensitive to touch and sensation. That too can be very painful. ... d=lipedema

Take a look at these pages and please, do get back to me with the questions on when, how (if known) etc and it will help me give some more concrete answers.

My best regards,

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Re: New member seeking information on edema and nerve proble

Postby Dusk » Sun Jul 11, 2010 1:32 am

Thanks much for your helpful reply.

"We do have a comprehensive page on edema"

And I've been carefully perusing it. :)

"Dusk, I was wondering - can you pinpoint when all this started?"

It all depends on which of my symptoms are relevant. But I'm inclined to say: several years ago. I remember, as far back as 2006, getting swelling in my legs, mainy my left leg, when I'd been sitting too long at my desk.

By "too long," I mean 24 hours straight. I've had a severe Internet addiction since 1997 - severe enough to have been a partial cause of loss of eyesight - which means that, for thirteen years, I've spent the vast majority of my time deskbound. Doctors keep asking me whether I took a long flight or a long car trip, so that my legs were motionless for a long period; well, the answer is that I've been doing the equivalent of long car trips nearly every day for thirteen years. (Of course, that's all stopped now; I can't sit in a chair for more than few seconds.)

I haven't had any injuries, unless you count sitting on a thick nail for several days in December. (It was sticking through the seat of the chair, but I didn't initially notice.) The really violent symptoms I had in March did coincide with what I now think might have been the onset of the flu. It must have been a relatively mild case of the flu, since I had both the seasonal flu shot and the swine flu shot last fall. But because of the other symptoms I was having, it felt like hell.

The leg swelling always went down upon elevation until this year. The swelling in my buttocks had been creeping up on me over the space of several years. I didn't get alarmed because I mistook the swelling for fat. I've been pear-shaped since childhood, and I've been about fifteen pounds overweight for the past ten years or so - not enough to worry me, but enough for me to attribute any growth in my buttocks to fat.

I should mention that there is also a genetics matter: both my mother and my grandmother were slim until they reached their late twenties, and then they gradually became obese - in my grandmother's case, extremely obese. When the same thing started happening to me in my late twenties, I quickly switched to a vegetarian, low-fat diet and lost fifteen pounds. So I attributed any problems with body size in recent years to me not getting enough exercise and not eating enough low-fat foods.

Now I wish that my mother and grandmother were still alive, so that I could ask them whether there were any other medical causes of their body growth. I've gone through some of my mother's medical records (she has a ton of them, mixed in with her other belongings, which I'm still sorting through), but haven't found any evidence so far that her obesity was diagnosed as having an underlying medical condition.

The first sign that serious problems were arising in my own body came last summer, when I began having pain in my lower left back when I was carrying objects. In the fall, I began having pain in my left hip when I exercised. In December, I began feeling pain in my left buttock and thigh when I sat down. This coincided with the nail episode, so I figured the nail was to blame, but my doctor noticed that my calves - especially my left calf - was hard, so he thought I'd pulled a hamstring.

The hardness seems to have been connected with the swelling; it comes and goes as the swelling does in that region. Likewise, the foot swelling I had in March and April has gone away, as have most of the nerve problems. Basically, it feels as though I began to go into a more serious phase of my illness - whatever it is - and then backed away.

This change for the better happened around the time that (1) I began taking doxycycline antibiotics (for an eye condition; I'm still on the antibiotics), (2) I began being active throughout the day, and (3) the weather turned warm, which meant that I was wearing lighter clothes (heavy clothes and even the lightest of blankets trigger swelling).

I really don't know for sure what is keeping me from being in the near-death condition I was in during March and April. It could be any of the above factors, or one I haven't thought of.

"If there is a certified lymphedema therapist near you, call them up and atlk to them."

I'd like to see a doctor who specializes in lymphedema, in case he knew about related medical conditions, and the closest one I can find is in Baltimore. (I live outside D.C.) I talked to his secretary - that was as close as I could get to talking to the doctor himself - and made clear that I had no health insurance, but there were no offers of discounts.

I really don't like having to wait, but I have a ten-thousand-dollar medical debt at the moment, thanks to the emergency situation I was in during March and April, and I'm in the low-income bracket, so I can't afford to add to my debt. So I'm hoping that my partner finds a second job soon.

"Also, in all those tests, did they ever do a lymphoscintigraphy test?"

No, that's why my primary care physician wants me to see the lymphedema specialist.

"BTW, there is also a condition called Lipedema in which the skin becomes hypersensitive to touch and sensation."

Thanks much for pointing out the lipedema page to me; I'll ask the lymphedema doctor about that possibility when I see him. As is always the case whenever I read symptoms lists these days, my reaction is yes and no. On the one hand, my swelling started out asymmetric, which is more indicative of lymphodema. On the other hand, the affected skin is colder, which is associated with lipedema. My feet *were* swollen in March and April, but have gone back to being not swollen.

As for Stemmer's sign, I'm still not sure I know the difference between a "thin fold of skin" and a "lump." I'd probably be further along in self-diagnosis if I could figure that out.

I have a question: Could you point me to any resources on all-body lymphedema? Because this swelling can affect me anywhere, the standard advice given to lymphedema patients - elevate the swollen limb(s) to reduce the swelling - doesn't help. That just causes the swelling to enter my torso and neck and head, which are the last places I want it to be. I figured that some all-body lymphedema folk might be dealing with the types of issues I face.
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Re: New member seeking information on edema and nerve proble

Postby patoco » Tue Jul 13, 2010 8:31 am

If you are looking for someone with all over LE, then you have come to the right place.

That is exactly what I have. Legs, arms, back, chest, pleural cavity, abdomen....everywhere.

There are literally no resources available to us. Also, believe it or not, we have had more discussions on this then all the other lymphedema sites combined.

Here is another discussion:


Unfortunately, there really is no established method to handle this either. We manage it (but barely) on me with massive diuretics. I hate this, but there is no MLD/CDT that will help. If you tried to move the fluid out of my legs, it really has no where to go. My upper torso is filled already. To my knowledge there really is no type compression garment either. You would probably have to wear a combination of several and you would be pretty much immobile and like a mummy.

I've tried using an arm sleeve and can't as that simply pushes the fluid from my arms into my chest and ab - which is already filled and causes serious breathing problems for me.

I had an all over lymphoscintigraphy done a couple years ago and it clearly shows the thoracic duct lymph sys and the right lymph drainage system as defunct. Almost no fluid at all was moving through either of them.

We handle the lung fluid using something called Pleurex Drainage system. I have tubes in both lung cavities and every three days I hook myself up to a cath bottle and drain them.

I really really wish I had something more helpful to say, and I am in the same boat. Those of us with the all over body LE are simply one of the last frontiers of lymphedema.

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Re: New member seeking information on edema and nerve proble

Postby Dusk » Tue Jul 13, 2010 11:07 am

There's nothing like hearing other people's health stories to make me feel better. :/

My coping techniques so far are:

1) Stay on my feet most of the time. Though I'm worried that the swelling may be spreading, at the moment it's mostly following gravity. So if I stay mostly upright and walking, I can mostly keep the swelling below the waist during the daytime.

2) Eat a high-potassium, very-low-salt diet. It could be my imagination, but that seems to help.

3) Keep taking the antibiotic my ophthalmologist prescribed. It may or may not be helping with the swelling, but it sure as heck is helping my eyes. (Before this began, I was already partially sighted from severe dry eye. Now my head is so dry that my remaining eyesight is threatened.)

I think the hardest part at the moment is not being sure how the winter will go (did I mention that I can't wear blankets?) and not being sure whether I'll get worse. At the moment, I'm not in much pain, and I can still do all the tasks I did before, except gardening (bending over or crouching aggravates the swelling) or travelling far. I'd really prefer that my health not decline further.

Anyway, how wonderful to hear that there are lots of discussions here of all-body LE. That really helps.
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Re: New member seeking information on edema and nerve proble

Postby blubrdfrend » Thu Jul 15, 2010 10:37 pm

Dusk, Pat and all others with all over LE. It is so sad to hear about your problems. I know those of us that only have limbs with LE feel grateful that we do not have all over LE. There is nothing we can do or advice that we can give to you. But we want you to know that we do care about you.
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Re: New member seeking information on edema and nerve proble

Postby Dusk » Sat Dec 18, 2010 12:11 am

I just want to let you folks know that I finally saw a lymphedema specialist. (I'd been delayed by ill health that prevented travel.) He doesn't believe I have lymphedema. Stemmer's sign was negative, and he says that whatever is causing my body to expand doesn't look like edema to him.

That's a relief, needless to say. But I'm glad that I was *thought* to have lymphedema, because it gave me the opportunity to read about your lives. I wouldn't have wanted to miss that.

(The doctors still haven't figured out what I've got, darn it.)
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Re: New member seeking information on edema and nerve proble

Postby patoco » Sat Dec 18, 2010 9:57 am

Hey Dusk

Glad to hear from you. I too am glad you don't have LE, but still wish you could achieve a correct diagnosis.

I'll take another look around to see if I can find anything.

Best to you

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Re: New member seeking information on edema and nerve proble

Postby evelyn » Sat Dec 18, 2010 8:09 pm

Hi Dusk,

I feel bad about your present health predicament. In fact, this family of, emphatizes very strongly with you, I'm sure. If it's not LE (thank God), and you find yourself in a dilemma with your finances, have you tried looking into social services? My friend with a serious lung problem is in straits for earning enough money and paying her bills. She had to approach Medicaid and they were very sympathetic. Now she goes to her doctor regularly (with a $5 co-pay), free hospitlization and medicine. She abhors being a welfare case, but there are those of us who have no choice.

My hopes and prayers for you.

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