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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Postby angel » Fri Jul 27, 2007 2:26 pm

Hello haven't posted in a little while because I am beside myself with frustration and illness.
I have now been told I may develop Lupus later in life after our family doc compared myself and my mothers charts-(mum has SLE)
Went for a scan on my kidneys today which was clear-I am breathless, have bad stomach swelling and puffy ankles. Plus my swelling has moved over to my left leg-the le therapist commented and agreed on this yesterday.
She was very sympathetic and agrees I am pretty ill, but I do not know what to do.
I am off work after having to go home only a little while into my shift because I was so ill. I had terrible stomach pains and diahorrea and the pain in my legs/ankles was unbelievable.
My stomach feels like it is going to explode, and my pelvic bone now has fluid in it. The lady who scanned me today said any fluid in my organs would not show up in a ultrasound scan.
I KNOW I am ill-I almost feel it would be a relief to go into hospital-it sound mad but I am so desperate for so kind of relief from this hell.
The tissue in my stomach on my right side is thickened, and I am just exhausted and the slightest exertion makes me breathless. It is also uncomfortable. going to doc on monday. Please Help! thankyou
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Postby patoco » Sun Jul 29, 2007 8:32 pm

Hey Angel :)

Sorry for the delay in replying...been a zany week :?

First, let me say that it is so important not to dwell on the doc telling you that you may develop lupus. From that I take it, you may not develop it as well. Stay positive here :wink:

Who told you that the fluid is inside the bone? Not sure I would buy that one. Physiologically speaking that would seem almost impossible.

Talk to you therapist, it is imperative that you get on a routine of regular and systematic abdominal lymph node stimulation and lymphatic massage.

This is actually quite easy and something that you can do yourself - even several times a day.

Here's a couple things though that are not well known about abdominal lymphedema.

First, as the swelling increases, it causes the intestinal lymphatic to dilate. As a result, your body looses it's ability to "metabolize" proteins.
This creates a viscous cycle. As your protein level decreases, there is more edema. Infact edema itself is a good indicator (in these situations) of protein malabsorption. This would also account for the diarrhea you have been experiencing. It is common with dilated intestinal lymphatics. The condition is actually called intestinal lymphangiectasia.

So, I would really urge your doc to test your protein levels. If you are deficient, a good "whey" based protein supplement can help.

Secondly, if you are experiencing rapid fluid gain, it may be necessary for an emerency/short term treatment with diuretics. The fluid needs to be removed quickly to prevent the lymphatic dilation from being permanent and from pernmanently damaging the lymphatic valves.

Also, eventually, if the abdominal cavity becomes filled up enough, the fluid will start going into your pulmonary/thoracic cavity - and that is something you really want to avoid.

These are just some thoughts, based on my experience, whta the LE doc told me and from the experience of other lymphers who went through the same problem.

Might be worth checking into.

Best to you :!: :!:

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Postby angel » Mon Jul 30, 2007 7:21 am

Thanks Pat!
Went to doc today took me off the water pills I was on because she said they had no effect, but I have been put on strong painkillers and she has taken me off the pill-she thinks it may have excaerbated my swelling, and of course lupus patients get worse on the pill-just my thinking-I reckon she is thinking of the two. Your right I might not develop lupus to be honest Pat I think I am as well as my le. my lovely le therapist basically gave me a pep talk the other day and told me I have to accept I am ill, and even if I get diagnoses of lupus I will still be ill-it won't change things. It si just so hard to cope just now. I try to be positive but the pain is so bad, and now my hands are affected to. I have passed my le therapist's details onto my doc so she can ring her. I am signed off work for another week. Just praying I can get back to work-but this stomch buisness is the thing that worries me most. Thanks again for the advice.
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Postby angel » Mon Jul 30, 2007 7:23 am

oh sorry i meant the pelvic cavity.
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