monthly fever, rashes and chills

FLU SHOTS, trusting doctors, stomach swelling, compression garment fitting, perception of lymphedema, anger, shoulders, shoulder blades, pantyhose, benadryl, TB test, shaking leg

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monthly fever, rashes and chills

Postby marison » Thu Sep 20, 2007 4:22 pm

My husband first noticed symptoms of lymphedema in
February of 2006, at age 28. It started with a high
fever, chills and muscle pains. Afterwards he noticed
scrotal swelling, and when he went to the doctor they
realized that his right leg was swelling as well. His
left arm was slightly swollen as well, though this
isn't very noticeable unless you compare it to the
other arm. Over time the swelling spread to the left
leg as well, though it remains somewhat less swollen
than the right one. The doctors ran a number of tests,
including a chest x-ray; numerous blood panels;
ultrasounds of the scrotum and the leg veins;
lymphscintigraphies of the legs and the arms;
abdominal and head-and-neck CAT scans; a TB test and a
blood test for filariasis, which he had some chance of
having since he had traveled in the tropics; and a
biopsy of a lymph node in the neck. All of that
testing gave no insight into the cause of the
lymphedema. His organs appear to be functioning
normally, he has no visible blockages, there is no
sign of any kind of tumor, and the blood work
indicates that he doesn't seem to have any infection
or inflammation. He also saw an infectious disease
specialist who was confident that there was no
infection involved. One doctor speculated that there
is some kind of lymphatic blockage in the chest, but
it couldn't be seen on any of the imaging that was
done. The only observation we gained was that he has
high blood pressure, and his doctor put him on
lisinopril, a high BP medicine that does not cause
edema as a side-effect.

What we find most mysterious is that my husband
continues to have fevers. After the fever at the onset
of the swelling, there was another in March, and again
in June. The next was in March of the following year,
then since June he has had it about 4 times in four
months. It usually begins with a run-down feeling and
rashes on the thighs and hips. Sometimes he also gets
severe muscle pains during that time, often they are
ordinary aches and pains that could be explained by
some physical activity he's done the day before,
except that the pain is very intense. Sometimes there
is a pain in one of his testicles, which are always
under abnormal pressure because of the scrotal
swelling. After this initial discomfort, which usually
begins sometime in the morning or afternoon, he begins
to feel cold, and the cold progresses until he is
shivering violently even if he's under a pile of
blankets. After a while his body warms up, getting
very hot. We once measured his temperature at almost
104 degrees F during this phase of the fever. After an
hour or two the fever usually begins to break, then he
begins to sweat profusely. The cold, heat and sweating
usually go in a cycle and subside over the next few
hours, and by morning he is feeling somewhat better.

My husband isn't taking any kind of medicine for his
lymphedema. Intially a doctor tried a diuretic but it
didn't reduce the swelling at all. He uses thigh-high
support stockings to control the leg swelling, and
uses Ace-type elastic bandages wrapped around his
scrotum to help control the scrotal swelling. He often
wears elastic compression pants, the type that are
sold for baseball, to help compress the scrotum as
well as the hips and upper thighs. This therapy has
been successful at preventing the swelling from
getting worse, and it has been fairly stable for about
a year now.
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Postby GreenFuzzer » Thu Sep 20, 2007 7:49 pm

I'm sorry to hear your husband is going through such a time. I'm confused about a few things however. Is your husband's swelling only when there is times of the cold and fevers? If so that seems very odd to me. You mentioned he has seen some specialist has he seen a rheumatologist? Has he been checked for lupus or another of those type of diseases, like RA? I wish you and him well.
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Postby marison » Thu Sep 20, 2007 9:39 pm

Hi! Thank you for taking your time in reading my husband's case. To answer your question, no, the swellings don't just occur when he has the fever and colds, he has swellings all the time. The first time they noticed the swellings was the time when he had the fever and chills in February of 2006. After that the fever and chills, and this time with rashes, occurred again in March and June of that year but all the time, he has the swellings.

He had seen a rheumatologist before and tested him with all the possible diseases but they didn't find anything wrong with him besides the lymphedema.

What worries us so much right now is the monthly attacks of these sickness (fever, rashes and chills) since June of this year. I really want to find out if this is normal to people with lymphedema or if there is something we could do about it.

Thank you so much again, GreenFuzzer, for your message.
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Postby joanne johnson » Thu Sep 20, 2007 11:47 pm

Hi Marison,
It sounds as if your poor husband has really had a difficult time The rashes,fever and chills really sound like cellulitis infections which are very common with lymphedema. Are the rashes painful, red and hot to the touch? Cellulitis infections really make you feel really sick and very tired. Your husband should be seen by a doctor while he is sick to check for this type of infection.
Antibiotics really work well to clear up the infection. I have had cellulitis more times than I care to remember. I take antibiotics every day to help prevent infection. It does does eliminate the infections but they occur less frequently.
Let us know how he makes out. Good luck to both of you.
joanne johnson
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Postby GreenFuzzer » Fri Sep 21, 2007 12:57 am

Knowing he has seen a rheumy makes me agree with Joanne. If he hasn't seen a Dr during one of these flares he really needs to. If he already has seen a Dr during a flare what did they do? Did they do blood work? Did they culture or biopsy the rash?

I have these times where I get uncontrollably cold and when that happens I get so tired that I can't keep my eyes open. Sometimes it hits so fast I can't move from my chair to the bedroom. I sleep until I wake up on my own and then I'm nice and warm again, I have never had what you have described though. My Dr's look at me like I'm nuts when I tell them though.

I have a feeling your husband is as thankful for having you, as I am for having my husband. What we would do without our loving, caring spouses I don't know. We do love you and thank you for all you do for us.
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Postby marison » Sun Sep 23, 2007 11:22 pm

Hi! First of all I want to say that I really feel good and kind of relieved after I joined this community. I'm still new here and still not that familiar with lymphedema since my husband just had it more than a year and a half ago (he is 29 years old, by the way). I try to be calm as much as I can when he gets sick but it really worries me A LOT that's why I try to read as much as I can about his condition.

The rashes are like a bunch of insect bites with redness in between them. He said it's painful (but not very painful) and hot to the touch. He doesn't use antibiotics when he gets sick, usually, he takes ibuprofen (every 4 hours until his fever subsides). The rashes usually fade away a day or two after his fever. He went to see his doctor at one time when he got sick and had bloodwork but they didn't find any indication that there's an immune system reaction. They didn't culture or biopsy the rashes though.

Joanne, in your case, When does the cellulitis occur? How many days does it take before they fade away?

GreenFuzzer, do you get skin rashes too?

Thank you, both, for sharing us your experiences.
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Postby patoco » Mon Sep 24, 2007 12:28 am

Hi Marison

Welcome to our family here :)

I been thinking about what you wrote concerning your hubby and trying to think of all that might be involved with those spells he goes through.

Wanted to give a big second to what GreenFuzzer and Joanne both said.

All this combined does sound like some type of autoimmune dysfunction, which can be terribly hard to diagnose. I have always found it interesting that many with lymphedema also have some type of autoimmune problem. I suspect this comes from the constant inflammatory state that lymphedema can produce.

However, having said that...this Joanne said...cellulitis infections cause you to feel that too. I know I have the rash, fever and chills too.

If it is cellulitis, it is terribly important that he take antibiotics. Usually, with antibiotics, things will clear up within a few days.

My concern is that if he is not treated with antibiotics and it is an infection that it can do greater damage to the lymph system.

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Postby Lynora » Mon Sep 24, 2007 2:05 am

I recently spoke to someone who had an added complication of malaria with lymphoedema! He developed lymphoedema in one leg, after suffering an infected insect bite whilst living in Africa some years ago, and also frequently went through malarial episodes - chills, fever, pain - but all over within 24 hours. His doctors found it difficult to isolate the causes. He is now on permanent anti-biotics. Cellulitis can deteriorate rapidly without antibiotics, so I would discuss with your medic the requirement for long term antibiotics, due the regularity of the episodes your husband is experiencing. It would be better to take pills as a preventative, than to end up hospitalised on IV's.
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Postby joanne johnson » Wed Sep 26, 2007 1:00 am

Hi Marison,
When I get cellulitis it actually looks more like red blotches than a rash. I definately have more of a tendency to get an infection if I have been on my feet more more than usual such as preparation for a holiday. I was sick as a dog for my daughter's wedding! Most times the infection comes at random times and apparantly no reason. If I can catch it right away I get off my feet and take stronger antibiotics and crawl into bed and it may not become too severe.

The worst part of the cellulitis pain and fever are usually over in 3-5 days but the swelling and continued pain can last for a couple of weeks. I always recognise the infection right away.

It's not a pretty picture, but I hope this info. will be of some help to you. I think this senario is quite typical, unfortunately.
joanne johnson
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