Sorry I haven't been posting much lately (I have been lurking), but this "lovely" disease has thrown me another curve ball. I don't remember anyone talking about this particular thing before, but if anyone has any info to share, I'm listening!

Remember a few monthis ago the doctor thought I had cellulitis.....well....it wasn't. Instead it's "weeping edema". My legs and tops of my feet are constantly swollen. The lymph that separates from the blood doesn't go back up my legs due to lack of motion because this lousy disease has taken away any ability for them to move. The capillaries become full -- leaks into the skin -- then attempts to escape by causing the skin to break open and the mess proceeds to run down my leg and foot. Yuck!

Some places appear as blisters and others like golf ball size lumps that gradually break open looking like an alien is trying to escape. It feels really squishy when touched. So now I have to wear "Unna Boots" wrapped with Ace bandages all the time. The home nurses from the local hospital come once a week to change them. Tried leaving them off for two days and my legs were more swollen than ever with over a dozen open sores. Of course my legs hurt, feel heavier than ever and my footwear selection is limited to two pair of scuff slippers. My Crocs are even too small. It's also good to keep my legs elevated as often as possible.

Guess this is another way MS has taken my life away. Yeah, I know, trust the Lord, one day at a time, be thankful for small blessings...........but....sometimes it sure is hard to find any quality of life and a reason to wake up each day.

Has anyone who "sits" all the time had any similar problems? Take care....

I've been having some problems with edema since I had steroids in december for a flare.

I've been wearing Edema Wear to try to get rid of it, but it hasnt helped that much. About the only thing that did really help for me seemed to be when I got my AFO (Ankle Foot Orthotic, brace that helps me with the foot drop the flare gave me) Two days after I got my AFO, and had been wearing it constantly, with the shoe tied fairly tightly, a bunch of the edema came off. Not all of it, but enough that I noticed it.

I'd been sitting a lot since this flare hit, and when I got the AFO and could get up and move around (also doing some aquatic PT) I think being able to move around again without tripping over my foot really helped make some of the edema go away. Just not all of it, and it's really uncomfortable. Wondering if it's contributing to a lot of the numb feelings I have.

Not feeling really good this weekend, so I've been sitting around a lot again. The edema is coming back. It's not back in my feet, but I can feel it around my waist, back and hands and down my legs. Keeping my shoes on seems to help the edema not get out of control in my feet. (AFO is built into one of my sneakers) . I really hate this edema.

Judy,
I've been in a chair for 2 years (I do sit a lot) and on my left "bad" leg, the top of foot is so swollen I can't put shoes on unless they are like ballet flats, nothing up and over swollen top of foot. My PCP has seen swelling before, but doubt in the area of continual wheelchair use. I have been fearful of it bursting open like the weeping edema you describe. Can they drain it with a needle or something? I can't walk, try to move it sometimes and can self-toilet, pivoting to sit using bar. I try to make left foot bear a little weight when I do so. Keep me informed!!

Judy

I'm so sorry you're suffering. The condition sounds horrible and I don't blame you one bit for feeling the way you do. Seems like there ought to be some sort of pill for this.....there's one for everything else.

im so sorry this happened to you My friend has this (and MS) and we havent been able to explain it. She sees her MD on monday. perhaps you helped someone else...thanks!

Oh Judy, that is just awful. It's bad enough when MS has made it difficult to move our legs and feet, but this horrible side effect of that, is unconscionable. I am so sorry.

Is there any possiblity that a little PT could help? If they/you can get your legs moving, to keep the blood flowing properly.

If you cannot move your legs or feet voluntarily anymore, then maybe a PT could come to your home daily and move your legs for you.

When I was in the hospital in PT, at first couldn't move my left leg much at all. My right leg moved with difficuly and PT moved my left leg for me and soon I was able to move it a little. That is still getting a little better each day.

Ask your Doc, if this could possibly work for you, Judy.

YEP!

I have that ugly "weeping edema" and I DID develop cellulitis and made a quick trip to the emergency room. My white blood count was 31,000.

Right now the BIG bubbles are gone and I do not have the fluid drip. I think that maybe some of the medications and supplements I take might have got me this release from the severe symptoms.

I noticed some improvement shortly after I started taking some ASTAXANTHIN (Jarrow formula 4 mg softgels).

I am taking 4mg three times a day to raise my HDL.

I also take a dieuretic FUROSEMIDE 40 mg twice a day to lower my body fluid level.

I have a very expensive lymphedema pump $6,000 which I could not use because of the infections in my leg. I intend to start using it again now that the infections are gone. The skin is still very pink and feels like a mild sunburn.

jackD


Atherosclerosis. 2010 Apr;209(2):520-3. Epub 2009 Oct 14.

Administration of natural astaxanthin increases serum HDL-cholesterol and adiponectin in subjects with mild hyperlipidemia.

Yoshida H, Yanai H, Ito K, Tomono Y, Koikeda T, Tsukahara H, Tada N.
SourceDepartment of Laboratory Medicine, Jikei University Kashiwa Hospital, Chiba, Japan. hyoshida@jikei.ac.jp

Abstract
BACKGROUND: Astaxanthin has been reported to improve dyslipidemia and metabolic syndrome in animals, but such effects in humans are not well known.

METHODS: Placebo-controlled astaxanthin administration at doses of 0, 6, 12, 18 mg/day for 12 weeks was randomly allocated to 61 non-obese subjects with fasting serum triglyceride of 120-200mg/dl and without diabetes and hypertension, aged 25-60 years.

RESULTS: In before and after tests, body mass index (BMI) and LDL-cholesterol were unaffected at all doses, however, triglyceride decreased, while HDL-cholesterol increased significantly. Multiple comparison tests showed that 12 and 18 mg/day doses significantly reduced triglyceride, and 6 and 12 mg doses significantly increased HDL-cholesterol. Serum adiponectin was increased by astaxanthin (12 and 18 mg/day), and changes of adiponectin correlated positively with HDL-cholesterol changes independent of age and BMI.

CONCLUSIONS: This first-ever randomized, placebo-controlled human study suggests that astaxanthin consumption ameliorates triglyceride and HDL-cholesterol in correlation with increased adiponectin in humans.

Copyright 2009 Elsevier Ireland Ltd. All rights reserved.

PMID:19892350[PubMed - indexed for MEDLINE]


Altern Med Rev. 2011 Dec;16(4):355-64.

Astaxanthin, cell membrane nutrient with diverse clinical benefits and anti-aging potential.

Kidd P.
SourceCorrespondence address: 847 Elm Street, El Cerrito, CA 94530 Email: dockidd@dockidd.com.

Abstract
Astaxanthin, a xanthophyll carotenoid, is a nutrient with unique cell membrane actions and diverse clinical benefits. This molecule neutralizes free radicals or other oxidants by either accepting or donating electrons, and without being destroyed or becoming a pro-oxidant in the process. Its linear, polar-nonpolar-polar molecular layout equips it to precisely insert into the membrane and span its entire width. In this position, astaxanthin can intercept reactive molecular species within the membrane's hydrophobic interior and along its hydrophilic boundaries. Clinically, astaxanthin has shown diverse benefits, with excellent safety and tolerability. In double-blind, randomized controlled trials (RCTs), astaxanthin lowered oxidative stress in overweight and obese subjects and in smokers. It blocked oxidative DNA damage, lowered C-reactive protein (CRP) and other inflammation biomarkers, and boosted immunity in the tuberculin skin test. Astaxanthin lowered triglycerides and raised HDL-cholesterol in another trial and improved blood flow in an experimental microcirculation model. It improved cognition in a small clinical trial and boosted proliferation and differentiation of cultured nerve stem cells. In several Japanese RCTs, astaxanthin improved visual acuity and eye accommodation. It improved reproductive performance in men and reflux symptoms in H. pylori patients. In preliminary trials it showed promise for sports performance (soccer). In cultured cells, astaxanthin protected the mitochondria against endogenous oxygen radicals, conserved their redox (antioxidant) capacity, and enhanced their energy production efficiency. The concentrations used in these cells would be attainable in humans by modest dietary intakes. Astaxanthin's clinical success extends beyond protection against oxidative stress and inflammation, to demonstrable promise for slowing age-related functional decline.

PMID:22214255[PubMed - in process

Mol Nutr Food Res. 2011 Jan;55(1):150-65. doi: 10.1002/mnfr.201000414. Epub 2010 Nov 18.

Potential health-promoting effects of astaxanthin: a high-value carotenoid mostly from microalgae.

Yuan JP, Peng J, Yin K, Wang JH.
SourceGuangdong Provincial Key Laboratory of Marine Resources and Coastal Engineering, School of Marine Sciences, Sun Yat-Sen University, Guangzhou, PR China. yuanjp@mail.sysu.edu.cn

Abstract
The ketocarotenoid astaxanthin can be found in the microalgae Haematococcus pluvialis, Chlorella zofingiensis, and Chlorococcum sp., and the red yeast Phaffia rhodozyma. The microalga H. pluvialis has the highest capacity to accumulate astaxanthin up to 4-5% of cell dry weight. Astaxanthin has been attributed with extraordinary potential for protecting the organism against a wide range of diseases, and has considerable potential and promising applications in human health. Numerous studies have shown that astaxanthin has potential health-promoting effects in the prevention and treatment of various diseases, such as cancers, chronic inflammatory diseases, metabolic syndrome, diabetes, diabetic nephropathy, cardiovascular diseases, gastrointestinal diseases, liver diseases, neurodegenerative diseases, eye diseases, skin diseases, exercise-induced fatigue, male infertility, and HgCl₂-induced acute renal failure. In this article, the currently available scientific literature regarding the most significant activities of astaxanthin is reviewed.

Copyright © 2011 WILEY-VCH Verlag GmbH & Co. KGaA, Weinheim.

PMID:21207519[PubMed - indexed for MEDLINE]

I would like to add that my edema is caused by chronic venous insufficiency in my right leg only. My high blood pressure also makes it worse.

http://www.lymphedemapeople.com/thes...ufficiency.htm

I also take some PYCNOGENOL(pine bark extract) 100 mg twice a day to reduce the edema.

Phytomedicine. 2010 Sep;17(11):835-9. Epub 2010 Jun 25.

Improvement of signs and symptoms of chronic venous insufficiency and microangiopathy with Pycnogenol: a prospective, controlled study.
Cesarone MR, Belcaro G, Rohdewald P, Pellegrini L, Ledda A, Vinciguerra G, Ricci A, Ippolito E, Fano F, Dugall M, Cacchio M, Di Renzo A, Hosoi M, Stuard S, Corsi M.
SourceDepartment of Biomedical Sciences, G D'Annunzio, Chieti-Pescara University, Faculty of Motory Sciences, L'Aquila University, Italy.

Abstract
The aim of this study was to evaluate the clinical efficacy of standardized French maritime pine bark extract Pycnogenol in patients with severe chronic venous insufficiency (CVI). 98 subjects with symptomatic CVI and edema were randomly assigned to one group treated with 150 mg Pycnogenol a day only, another group with stockings only and a third group with both Pycnogenol and elastic stockings. The average ambulatory venous pressure (AVP) at inclusion was 58+/-7 mm Hg (range 48-60 mm Hg) with a refilling time (RT)<12 s (average 7+/-2 s). The duration of the disease was on average 6.0+/-3.1 years. There were no differences in AVP or RT among the 3 groups at inclusion and microcirculatory and clinical evaluations were comparable. After 8 weeks treatment there was a significant decrease of rate of ankle swelling, resting flux, transcutaneous pO(2) and clinical symptom scores in all groups with significantly better results for the combination treatment. Pycnogenol alone was more effective than compression alone for all parameters (p<0.05). No side-effects were observed; compliance and tolerability were very good. This study corroborates a significant clinical role for Pycnogenol in the management, treatment and control of CVI also in combination with compression.

Copyright 2010 Elsevier GmbH. All rights reserved.

Fitoterapia. 2000 Jun;71(3):236-44.
Pycnogenol in chronic venous insufficiency.

Arcangeli P.

SourceProfessore di Clinica Medica Generale e Terapia Medica, Università degli Studi di Firenze, Via Marsilio Ficino 10, I-50122, Firenze, Italy.

Abstract
Forty patients with chronic venous insufficiency (CVI) and varices of the legs were selected and double-blindly randomly assigned to a treatment with Pycnogenol (French maritime pine bark extract), 100 mg x 3/day or a placebo for 2 months, according to a double-blind experimental design. The effects of the treatment were evaluated by scoring the symptomatology with a semi-quantitative scale, and the venous blood flow by means of a hand-held Doppler ultrasound. The tolerability was evaluated by recording the adverse effects and by means of hematology and blood chemistry parameters, before and at the end of the treatment. Pycnogenol treatment induced a significant reduction in subcutaneous edema as well as heaviness and pain in the legs, on both after 30 and 60 days, the evaluation time periods. Approximately 60% of patients treated with Pycnogenol(R) experienced a complete disappearance of edema (the most rapidly disappearing symptom) and pain at the end of the treatment, while almost all the patients reported a reduction in leg heaviness which disappeared in approximately 33% of patients. These changes were statistically significant. No effect was observed in the placebo-treated subjects. No effect on the venous blood flow was observed in either of the experimental groups.

PMID:10844161[PubMed - indexed for MEDLINE]


It also helps my "other problem" when I add some UBIQUINOL(CQ-10).

jackD

Panminerva Med. 2010 Jun;52(2 Suppl 1):21-5.

Investigation of Pycnogenol® in combination with coenzymeQ10 in heart failure patients (NYHA II/III).

Belcaro G, Cesarone MR, Dugall M, Hosoi M, Ippolito E, Bavera P, Grossi MG.
SourceIrvine3 Labs, Department Biomedical Sciences, Chieti-Pescara University, Pescara, Italy. cardres@abol.it

Abstract
AIM: In this study we investigated benefits of a Pycnogenol - coenzyme Q10 combination (PycnoQ10) taken as an adjunct to medical treatment in stable heart failure patients. The aim of this single-blinded, 12-week observational study was to provide functional parameters such as exercise capacity, ejection fraction and distal edema.

METHODS: The essential element for inclusion was a stable level of heart failure within the past three months and stable NYHA class II or III (6 months). The heart failure management was in accordance with AHA guidelines for "best treatment." The treatment and control groups were comparable at baseline. The mean age of the PycnoQ10-treated patients was 61.3+/-7.1 years and 62.1+/-3.7 in the control group. All patients were taking medication and most patients (>75%) used three or more drugs for heart failure treatment. There were two dropouts in the PycnoQ10 treatment group and 6 in the control group (5 NYHA III patients).

RESULTS: Nine PycnoQ10 treated patients (out of 32) and 3 (out of 21) taking placebo improved NYHA class. Systolic and diastolic pressure as well as heart rate and respiratory rate were significantly lowered with PycnoQ10 as compared to the control group (P<0.05). No significant changes were observed in controls. Heart ejection fraction increased by 22.4% in the treatment group (P<0.05) versus 4.0% in controls. Walking distance on treadmill increased 3.3-fold in PycnoQ10 treated patients (P<0.05) but marginally improved in the control group. Distal edema decreased significantly in PycnoQ10 treated patients and only slightly in controls.

CONCLUSION: The association of Pycnogenol and CoQ10 may offer an important therapeutic option with a very good tolerability that improves heart failure management without side effects.
PMID:20657530[PubMed - indexed for MEDLINE]

JackD

My dad takes furosemide for edema that he gets from having a heart problem. They were trying to get me to take some of his furosemide (my dad and my aunt) because the edema I had was really annoying. I turned them down on the furosemide because I didnt want to keep running to the potty.

You described your edema as being very pink and feeling sunburned. That's exactly what my feet were feeling up until a few days ago. Now the sunburn feeling is only on the back of my right ankle near my achilles tendon.

I have on the tops of my feet what feel like little tiny scabs, but it's not blood, it's like scabs of some clear fluid. I bet that's where some of the fluid in my feet was starting to weep thru the skin. I keep hoping the rest of this edema will go away, but it sure is taking a long time. Hope it's not permanent.

from one judy to another,
i'm so sorry this is happening to you.

i hope there's something that can be done to improve your situation.
it's so hard to deal with pain and the sufferings of MS on a daily basis.
my prayers are with you for some healing.