Misserable in Fla...with numbness and tingling

[bklsmom]

Hello everyone, It's been a couple years since I've been on here, but I'm back and not happy that I feel the need to be back here. I just wish this dang Lymphedema in my leg would go away!! To be perfectly honest, I try and convince myself that I don't have lymphedema, since my swelling isn't severe like I've seen on TV with the massive legs! My right thigh is always larger than the left, but only noticeable if I wear shorts or a bathing suit, ( I no longer wear either ). I can feel the difference in the way my pant leggs fit compaired to the left. For the past year, maybe longer, I have had numbness, burning, tingling, and sometimes at night if I roll over in bed (when I sleep in bed, most nights the recliner is my bed) I get the sharp shooting pain down my right thigh. I am being treated also by a Rheumatologist for my fibromyalgia, and he does give me injections of cortisone in that thigh. It never takes away the numb and tingling feeling, but it does take away the shooting pain I get at night. A few months ago, my Rheumatologist sent me for an MRI to make sure I didn't have something wrong in my back and everything in my back was normal. He does not think my numbness is due to lymphedema, and wants me to go to a neurologist and have nerve testing done. Two weeks ago, I went back to work and I have noticed that my leg is swelling a lot more, and not just my thigh but also my foot and ankle. In fact when I take my shoe and sock off, you can see the indention from where my sock was and also where my shoe was. Now, my toes are feeling numb and burning and tingling. Never had that in my toes before. Could all this neuropathy be from the lymphedema? I hardly ever massage, except when I am very swollen. I don't wrap as I have no bandages, and haven't even a clue where to get them. I only went to a lymphedema clinic once, every day for a month and he did the Vodder method massage and then wrapped. After the month, I was measured for stockings. I recieved 2 pair of Jobst garments that just came to my knee, but I never wore them because after about 10 minutes they would be around my ankle. After all that was said and done, my insurance denied the charges and I had to pay for all those visits, and for the compression hose. I have not, been back for lymphedema treatments, since it is not covered by my insurance. I am still paying on them from 4 years ago. I beg my husband every summer to move, as it is always so much worse and the swollon leg is noticeable, even in pants, in the summer. I live in Fla, and I don't care what my Oncologist says, (he says the heat should not affect the lymphedema). My leg has been hurting, tingling, numb and now the toes...I really need to work, but I don't know how long I will be able to stand the pain. Any suggestions would be greatly appreciated!! I am misserable and making everyone around me misserable too!! My poor husband...

Nancy

[patoco]

Hey Nancy

I grew up in Florida, so I can really understand what you are saying.

I hate to disappoint you doc, but heat, hot weather does effect lymphedema. The heat makes the lymph system more sluggish, plus in the body's attempt to maintain body temperature, hot weather will cause you to retain more fluid - hence more swelling. Actually, the doc should be aware of that basic fact too.

You remind me of one of my sisters and of the fact that it is tissue texture - not size - that determines that stage of LE. Susan's left leg has never been very swollen. In fact it is so mild, you might even miss noticing it. As a result, she has never done anything about her LE. Hmmmm....and she is one of the best wound care nurses you'll find anywhere.

Sisters don't listen to brothers like they should - and I've tried to get her to understand that even though her leg isn't large, the tissue of the leg indicates she is very much in later stage two. It is as hard as a rock.

The pain, tingling etc very well can be from lymphedema. Especially so if the legt is much harder then the other. The tissue hardening (fibrosis) compacts, puts pressure on and disturbs the nerves. Now the tingling is also a sign many people report having before their LE gets much worse. So, I would really try and get to a LE therapist for an evaluation and management program.

Our page on short strech bandages gives a number of links on where you can buy them and lots of basic info on them as well:

Short Stretch Bandages are for Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

Compression Bandages for Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

You may even want to investigate a new product called:

Farrow Wrap

http://www.lymphedemapeople.com/wiki/do ... arrow_wrap

I'm not sure what health insurance company you have, but almost all of them now cover some massage therapy and compression garments. They generally don't cover the short strech bandages.

If they deny them - appeal, appeal and appeal. Your doctor needs to support you through providing medical records and a letter of medical necessity

http://www.lymphedemapeople.com/wiki/do ... _necessity

How to File A Health Insurance Appeal

http://www.lymphedemapeople.com/wiki/do ... nce_appeal

How to File a Complaint Against Your Insurance Company

http://www.lymphedemapeople.com/wiki/do ... ce_company

Hope this helps!!!!

My best to you

Pat

[bklsmom]

Thanks Pat for all the info, I'm sure it will take me a while to go through it all, but I will. You mentioned the texture of my legs...Hmmmm, I never knew about that, and yes, my right leg is much harder than the other, I jokingly call it my "club leg", because it feels so much heavier than my left, and most people don't notice the size difference as they notice the "firmness". All new hearing this, so the hardness is a sign that the lymph is worse in that leg????? I do have pitting, and actually if you press on my lower leg, it will stay indented for quite a long time, I've noticed that even a half hour later, you can still see where it was pushed in. So the pitting is NOT a bad sign? I really can see that I didnt' know much at all about lymphedema! Maybe, after the cancer diagnosis, and recovering from it, (praise God) I really didn't want to "know" about another complication from the Cancer. It's like a constant reminder of something that I don't want to remember. I get so frustrated, and angry sometimes...Nancy

[cleo]

Snap! Could be me. After posting on this site re the importance of self massage I got lazy as there is also little difference in my leg size. I also have 'tingly toes' and a feeling of numbness but was warned of this as lymph nodes were taken from a nerve and radiotherapy zaps more! Recently I was having knee trouble and the leg was aching....wasn't until then that I noticed the hardening calf and thigh muscle. That gave me the necessary scare and I am now back to the half hour massage morning and night. You literally do ignore it at your peril. Doesn't help the tingling but the muscle is pliable again and the pain gone.

[patoco]

Hey Cleo and Nancy

The firmess or fibrosis happens because the lymph fluid has such a significant amount of protein (waste protein) and as it continues to collect the interstitial tissues have such a buildup that the leg becomes hardened. This does mean that the lymphedema is worsening.

Remember too, that while there may be pitting initially, after awhile you won't get any pitting. The harder the leg becomes, the less it will pit.

Thanks for your note Cleo. You really do ignore LE at your own peril. I can sure testify to that too

No when you go through treatment the pain should lesson and hopefully to that tingly sensation.

As you go through the pages Nancy and have any questions, just jot 'em down here and we'll answer!

Pat