Felling like a swollen toad!

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nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 5/20/2009 8:32 PM (GMT -7)   
Man I wish the docs could figure out what is causing all of this edema. My legs have 4+ pitting edema.....even my toes are swollen and actually I'm swollen up to my thighs. My hands are also swollen but not as bad. I am fairly miserable to say the least. I've but on  25 lbs. in the last month and I know most of it was caused by the big increase of my Neurontin but we reduced the dose back to normal. One doc that I see wants me to lose the fluid "naturally". He wants me to "mall walk"....just short distances and cut back my fluid intake. I have Sjogrens disease for heaven sakes. If I don't drink my tongue literally sticks to the roof of my mouth because I'm so dry. I don't really drink that much, just sips frequently. If I talk 80 mg. of Lasix that takes care of most of the swelling but not all of it. I have no cardiac problems at all and my labs are good so I don't get it and I'm getting just a little depressed about it. I had gotten thinner last year and bought some cute clothes and I can't begin t get them on. I'm not about to go out and buy a new wardrobe. Does anyone else have problems with edema without having cardiac problems?
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2282
   Posted 5/20/2009 9:13 PM (GMT -7)   
Hi nurse2!
Sorry to hear about your predicament. I did have issues with my legs & feet swelling up a lot when I was having problems with my kidneys. Maybe an alternative to drinking water all the time (please check with your doc) would be to try sugarless candy -- it is available at pretty much any pharmacy in the diabetic section. I've tried that & it has really been helpful to me.
I do hope you start to feel better soon.
I definitely feel for you with all the idiot doctors. I've had a hard time with the docs myself. They get so caught up on the fact that I'm taking pain meds, that they refuse to even consider that something other than my meds could be causing a problem. As a result, they let things get out of control before they take me seriously & by then I am really, really sick. So, keep on your docs if something doesn't sound right until you get a diagnosis & a realistic treatment plan. It's one thing if their recommendations are not easy, but if you just can go walking at all, then they need to figure out some therapy that you are able to do.

feel better,
frances

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/20/2009 11:26 PM (GMT -7)   
Nurse2,
I know I have some swelling in my ankle areas and have had cardiac and arterial stuff all come back negative. I know my eating sucks right now so I'm not helping anything. I did put an ace compression ankle bandage on for awhile the other night when my ankle swelled up and it took it down by about half fairly quiclkly. I had been moving around a lot more that day. I know I need the neurontin (I take 1600mg/day which is about in the middle as far as dose goes) because every time I'm late on a dose I feel it.

I have a lot of empathy with you about clothes issues. I haven't bought a lot of clothes lately, and haven't needed to but now I only have a couple of things I can get into and those are the few with stretch waistebands. I haven't got money to buy new clothes and I hate shopping anyway. Plus I don't want to stay at this weight! It's the most I've ever weighed in my life. Not seriously obese but if I don't get a handle on it I will be. And it just makes me feel even more sluggish!

I hope you can find some answers!

PaLady

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/21/2009 5:47 AM (GMT -7)   
Nurse,
I know how you feel with the swelling!
This happened to me from a reaction to Lyrica, gained 20 lbs., had neurological symptoms, irregular heartbeat and +4 pitting edema!  Didn't start out with all the symptoms, weight gain and slight swelling began within a week...the longer I was on it the worse it got.  On my worst day, lucky for me I was at PT, my Physical Therapist at the time noticed while in pool therapy that I was trying to grip the bottom with my toes up instead of down.  I was also very spacy, my short term memory was crap.  She called my PMD right away and it was the LYRICA!  Had a full cardiac work up, thank God it was negative.....all of my symptoms resolved but the sad thing is that I was left with Lymphaedema in the left leg. 
You might want to get a referral to a Vascular Dr., they will do ultrasounds of the legs and be able to see if there is a flow problem.
I have a leg pump and have to wear pressure stockings (supposed to wear them everyday but in 105 degree heat?)....the swelling varies from day to day, somedays its not bad and others it feels like my leg weighs 500 lbs.  I no longer can wear sandles always tennis shoes because when tied they provide pressure....if I wear sandles within a few hours my foot swells around them and my toes look like snausages! 
Just a thought....Lasix does nothing for Lymphaedema!
I was on Neurontin for years before I was switched to Lyrica! After the reaction could not go back on Neurontin because of similar ingredients.....the nerve pain came back full force, the only relief I found was with Homeopathics!
I hope you find the answer soon!
XXOO
Patti
 
 

nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 5/21/2009 9:46 PM (GMT -7)   
PAlady,
I found out that on QVC their denim and Co. line is great. I'm short, only 5'1" and because of my sciolosis there is no room between my hip bone and the last ribs. Some of their denim have very small elastic waist bands....about the size that is on a slip. Buddy, I just love them.I had ordered a pair of crop pants in stretch denim and luckily I was ble to wear them.
The problem right now is that I ache all over and am so stiff. I can hardly get up off of the couch or out of a car. Our daughter went back to college so we keep her 2 1/2 yr. old daughter most of the time because she works full time, too. I'm really pooped at end of the day. When she goes to bed, I go to bed. Ah. someone out there must be able to come up with some idea to help us. Talk care of yourself.
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 5/21/2009 10:32 PM (GMT -7)   
nurse2
Something got to be causing your edema, I would definitely be pressing them for answers! Have they checked out your Lymphatic system? If you have problems with that, well that could explain the edema! There has got to be something causing it!
I do wish your well!

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/21/2009 10:43 PM (GMT -7)   
Nurse2,
Thanks for the tip about denim & co. Never tried that line, but I'm up for anything that's comfortable and inexpensive. I know they often have payment plans that stretch out over a few months, which is great. And I hate shopping!

I hope you find some help.

Take care,

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 5/22/2009 3:51 PM (GMT -7)   
Nurse 2, I am with WhiteBeard on this one. I have big major problems with swelling of the feet and legs. I wear the compression hose, not very pretty and pretty expensive. But, once you get fitted with a pair you can find them online for 1/2 the price. You need to keep pushing the PCP for answers. I have had so much swelling the fluid was leaking out of the skin on my legs. When they put compression hose on me the first time, the hose was dotted from all the fluid leaking out of the skin. I also ended up in the hospital once for 8 days with cellulitis. I was on Lasix but it did not work as good as the dr wanted. I was switched to Bumex, much stronger but have to watch it because of the kidneys....Susie


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 5/23/2009 1:26 AM (GMT -7)   

I was amazed one day when I look down and my father's leg and watter was seeping out of it too. His skin in his let looked like if you would have stuck him wifh a pin he would have flown around awhile like a balloon. He has has sone trouble with the leaking a little before.  I have compression  hoe and should wear them. I seem to be swollen right in the middle of mu stomach and it make's it hart to breath . That's a new one.

We'll have to keep in touchl

THanks, Njrse


Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 5/23/2009 8:04 AM (GMT -7)   

Nurse2 

I also swell like a ballon.  My hands and ankles always have edema.  Most the time I can't wear my rings in fear they might have to cut them off.  I can easly put on 10 - 25 lbs of water.  I take Lasix everyday twice a day for two years now.

First off as the others have posted and they are so very right!  You need to keep pushing to figure out what this is.  Some PCP's just treat the symptons and never look for the cause.  With edema the cause could KILL YOU!  After a long period I finally found out I have CHF and at a young age, 37.  My mother died at 54 from it, aunt died at 42 and grandfather died at 36.  All the same cause CHF.

So many things can cause edema but for your health is your responsibility, be a pain in the docs butt....  I bet you are loved by the people around you make sure they get to love you for years to come...lol

I wish you all the luck....

Laurie


39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


pieceOfCRPS
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 5/23/2009 9:59 AM (GMT -7)   
Please do not forget to investigate what you are eating. Many preservatives and additives are often a culprit. Especially MSG (otherwise known as monsodium glutamate) found in sausage, salami's processed foods of all kinds,, and alot of snacks like cheese curls and flavored potato chips, also in abundance in most chinese restaurants.

Good Luck to you

Su
CRPS what a piece.
 
Permanent severe nerve damage from crushing injury.
CRPS, unwillingness to take meds.  Doomed to a life of misery but with a positive outlook.
 


cshelp
Regular Member


Date Joined Mar 2009
Total Posts : 96
   Posted 5/23/2009 10:25 PM (GMT -7)   
I am sorry you are swelling so much, for women it is hard when we swell up. When my legs swell, I feel the whole world is looking at my ankles and half the time it is me. I dont wear my teds like I should but in the morning after a noc shift I can barely get them off my legs so half the time I dont feel they work. You said they get hot but for lymphedema they use tubi grip stockings and wrap the legs with ace bandages. This has helped alot of patients I care for. It takes a couple of months and then they wear the tubi grip stockings without the ace wraps. Ask your doctor about this method. My doctor asked why my legs swell and I told her no one ever knew why. It happened after my back fusion. My legs would swell up the ankles would be over the sides of my shoes. Hang in there. cshelp

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/23/2009 10:43 PM (GMT -7)   
Cshelp,
Interesting that my swelling - especially my left ankle, started after my fusion. The community nurse noticed it. Nobody can find anything, but it's never gone completely away. Just worse some times than at others.

PaLady
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