About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (61)

Jan 24, 2018 · Polymyalgia rheumatica in Autoimmune Diseases

I haven’t been writing lately but your story is so similar to my own. I am still on prednisone (4 mg) and have tried often to ween off of it, but can’t. When I tried to go down to 3 mg, the pain came back with a vengence! I also take tramadol twice a day and am told I can use 3 times a day but don’t. I also have gained so much weight and was overweight before I took it. When I try to lose some of the weight nothing works. I have other things going on also — arthritis in my knees, neuropothy in my legs and feet and lymphedema. Because of all this I can’t manage getting in and out of any car and am now home bound. I am so depressed also but keep on keeping on!

Oct 26, 2017 · Lymphedema in legs in Heart & Blood Health

Yes, I can get this lymphedema nurse to continue but I have to pay out of pocket.

Oct 26, 2017 · Lymphedema in legs in Heart & Blood Health

Glad to hear that you are under control now. I agree about doctors not taking this too seriously or brushing it aside as regular edema and giving diuretics for it. All the diuretics did for me was mess up my urinary tract! My lymphedema nurse explained that the lymph fluid is different and heavier than the fluid that builds up from regular edema which is usually a circulation or heart related condition. Who knew? She also said that exercise is important. I do a lot of pumping my feet and deep stomach breaths, in the nose and out the mouth. Plus other exercises using the arms. I have rotator cuff damage and my range of motion is limited, but I do what I can do.

Oct 26, 2017 · Lymphedema in legs in Heart & Blood Health

Thanks for asking! Right now I am two weeks into a new process of manual massage and leg wrapping. My lymphedema nurse comes on Mon and Thurs and massages both legs then wraps them in about 5-6 layers of compression wraps. She even wraps each toe. I take the wraps off the morning she comes and get my shower. I’d really like more showers but can’t manage with the wraps on! She did measurements today and my legs and feet have come down between 5 and 1 cms since the first measurements, so we are finally going in the right direction! Before this I was using farrow wraps and it was like 2 steps forward, one step back, three steps forward, two steps back, etc. I never saw any progress. I also use the leg pumps for 1 hour a day. The only problem is that there is a limit to the amount of time they will give me for this due to Medicare regulations. So we will see how that goes and what I am to do after the time limit is up.

Sep 25, 2017 · Lymphedema in legs in Heart & Blood Health

I know you think I have been sleeping after writing this message! LOL Actually I do spend a lot of time on my back doing what I have to do to keep this lymphedema in check. And yet it never looks any better. At first the doctor thought I just had swollen feet and legs and gave me a diuretic. That didn’t work — only messed up my urinary tract! After that my left leg swelled so much that a wound opened up and I had to go to the Wound Care Center for treatment. They wrapped my legs and said I needed compression stockings. I couldn’t put them on myself, so they suggested farrow wraps and a foot piece, but I could not put them on myself either. They also got me lymph leg pumps which they told me to use one hour twice a day. I do use these once a day, but it is a stretch to use twice a day. I kept asking the doctor if there was a lymphedema specialist I could see. Well it doesn’t seem like there are any lymph specialists! So she sent an in-home group to see me. There was an occupational therapist, a physical therapist and a lymphedema nurse. The lymphedema nurse was the only person I needed, but it seems like it was a package deal. Plus, she could only come three times a week. I needed these stockings on every day! And this service only lasted one month. I have tried to find someone who could put my wraps on for me every day (it only takes 15 minutes) but can’t find anyone. So now I use the leg pumps but don’t get the stockings on, so the fluid travels back down into my feet and legs. I walk with a walker as I have bad arthritis in my knees and also have neuropathy in my feet. I know there must be something that can be done for this, but haven’t found anyone who can do it!
Thanks for your concern.
Andrea

May 8, 2017 · Anyone here dealing with peripheral neuropathy? in Neuropathy

That’s interesting about the quinine. I knew the FDA did take it away in some form. Interesting that they left it in the tonic water! As far as getting supplements, Vitacost.com has a wonderful site and they are cheaper than other sites. I get my magnesium from Dr Carolyn Dean’s site. You can google Re-Mag. She has a lot of information on her products. My husband takes this form of magnesium also for his heart arythmeia. She has info on that too. There are many forms of magnesium, some act like a laxative, others calm you. I think it’s important to know or you won’t get the results you are seeking. Good luck to you.

May 8, 2017 · Anyone here dealing with peripheral neuropathy? in Neuropathy

I am taking alpha lipoic acid (ALA) and B vitamins for neuropathy. I have been told to watch the form the B vitamins are in. Bs are not well absorbed by the body, and the form they are in helps with absorption. B1 should be benfotiamine, not tiamine HCI, B6 should be Pyridoxal-5-Phosphate (P-5-P) not pyridoxine HCl, and B12 should be methylcobalamin not cyancobalamin. It doesn’t matter how much of these we take, if the body is not absorbing them, we just flush them away! Also, you might want to check the tonic water; I do not think it contains quinine anymore. I also use magnesium, but I get the liquid form called Re-Mag on line. It has helped me tremendously with the leg cramps and also has made my nails stronger — finally a side effect that is positive! I do know what you mean about the leg cramps as I’ve been there often. I tried the soap too, but to no avail. Hope this helps a bit,

May 6, 2017 · Anyone here dealing with peripheral neuropathy? in Neuropathy

Hi John. Thanks for all the info. I agree that supplements do help many things. I have avoided gall bladder surgery by using milk thistle and danderlion drops every morning. I also keep my glucose level down using an array of supplements. And… Dr Wahl is my hero. She cured herself of MS. Wonderful lady! I am going to check that facebook group you mentioned. I also have neuropathy with numbness and shooting pains– like needles sticking in my feet and toes. My doctor did recommend alpha lipoic acid for this and I have taken it for many years without noticing any difference. I have recently developed lymphedema in my legs and feet. They gave me leg pumps that massage your legs from the feet to the knees. I have been using these for one hour a day and have noticed recently that my feet are less numb and I get less shooting pains. I also have to use compression stockings. I wonder if this is helping my neuropathy? Guess it would be interesting for someone to do some research.