Leg pain

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Leg pain

Postby megthumm » Tue Jan 22, 2013 3:43 pm

Hi all I don't write much but I have a few questions. I have primary lymph in my left leg and developed it in my right at age 12. I'm 37 now. I also had the debunking surgeries as a kid, between 12-20. I work as a registered nurse and up until recently had no issues but cellulitis from increased swelling. I have chronic pain all over my left leg that I attribute to the surgeries. I have chosen to just deal with it. I additionally have a perm stress Fx in that foot from my swelling.

About two months ago I began having one of my usual ankle pains, except this time it got worse , had an X-ray that was negative and an MRI which showed nothing but swelling. Ortho put me in a cast boot and took me out of work. They believe that it is related to tendinitis with the swelling causing my tendons, etc to pull incorrectly. I stayed off it for weeks, went back to work and it came back. Now I'm out again with no income for four weeks to wear the boot full time. I'm sick of this pain and wondering if it is here to stay. Anyone have a similar issue ? My legs seem to be getting worse. I don't know how much longer I can work. I don't have short or long term disability, and have a family to support. Any advice would be great thanks- Meg
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Re: Leg pain

Postby patoco » Wed Jan 23, 2013 11:13 am

Hey Meg

Yes, yes and yes to what you said and asked.

The problem we face with leg lymphedema is that the largest nerve in our bodies runs straight down from the base of the spine to the toe and this is the sciatic nerve. With the swelling AND fibrosis (hardening) that nerve just gets more and more pressed.

I had leg pain at one time so intense that I really understand why people shoot themselves to get away from it. My doc finally convinced me to at least try some pain meds. I can not even begin to tell you the difference. It is unbelievable.

Speak to your doc and see if it might help yuou as well.

Oh, BTW, I too had a massive debulking surgery (Thompsons Procedure) on my left leg back in 1971, 72, 73 - and that is the one that gave me by far and wide the most pain. Also, it did nothing to help eliminate cellulitis either. I so regret having that surgery done and I will always wonder if that surgery was any reason my lymphoma started in that leg as well.

Pat
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Re: Leg pain

Postby megthumm » Wed Jan 23, 2013 11:38 am

Thanks Pat, my dr doesn't want to give me pain meds. I think he has a hard time believing my pain. I might just go and see a pain mgmt dr myself.
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Re: Leg pain

Postby megthumm » Wed Jan 23, 2013 11:41 am

I also agree about the surgeries, I had mine done at Boston Children's hospital and I'm from Philly. I'm not even sure what they did, I was only 2 when they started in 1977. I had both legs done but the leg with less surgery never bothers me at all.
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Re: Leg pain

Postby blubrdfrend » Thu Jan 24, 2013 11:40 am

Hello Meg, I could have written your story. I was in exactly the same position as you. I worked for years standing, walking and climbing the stairs of the courthouse. My family physician told me that the time would come when I would be unable to walk. I left his office, rolled my eyes and blew off his prediction. Well guess what? In my 40's I began to have pain. By the time I got home at the end of the day, I could hardly make it to the couch. I kept working until the inflammations started. My doctor said if it hurts don't walk on it. I haven't taken prescription pain medications yet. I had been off work and on my back for three months when I realized that my working days were over. My physician told me that if I continued to work, I could expect more inflammations. I left work and applied for disability and early retirement. I sent photos with my application. I did not have any problems with disability or retirement. I was 50 years old. The eagle does not fly as high as it once did, but I found there were things that are not as important as health. I can walk for 2 1/2 hours per day without pain. Walking more than 2 1/2 hours will subject me to pain and a couple of days in my chair. That is not 2 1/2 hours at a time. That is spread out in 24 hours. Meg, your work days are probably over. There is still life after work. Your life is not over it is just different. I am glad that you are a part of our group and that you posted your story. Let us know how you are doing. We care.
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Re: Leg pain

Postby megthumm » Thu Jan 24, 2013 3:26 pm

Thanks, you are all so kind. I kinda feel like I'm giving up if I try to get disability. I can't do a sit down job cause my legs swell, and the pain of being on them all day is a killer. I'm still trying to come up with a plan as wearing this cast boot really isn't helping. I don't see how people can afford to not work/disability. It doesn't kick in for 6 months. I have some impressive photos myself. Pat, I am wondering if since you also had the surgeries if you have many discolorations, bruise like areas on your legs? I have a ton and they are sore . I had a few biopsies but they were neg thank god. My legs are just so deformed from the surgeries, most docs don't know what to do with me.
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Re: Leg pain

Postby patoco » Fri Jan 25, 2013 11:17 am

Hey again :)

Oh yes, I have so many discolored areas I stopped counting. I also have masses of papillomatosis that have to be removed each and every year. This year, we took around 30 off both legs. Though these are usually benign, with lymphedema they can become malignant so protocol is that they be removed. I generally have it done at day surgery and the most I stay in is only a day.

BTW, that doc who doesn't believe in pain meds? Hit the jerk in the head with a hammer and ask him if that hurts :evil:
These people who say there is no pain involved with LE are just flat stupid and that is all there is to say about them. That concept is so outdated it isn't even funny.

If they are not afraid to read, show them this page:

Lymphedema and Pain Management

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

Have you decided whether or not to file for disability?

It was the toughest decision for me. Thank God the company I worked for, pays a legal firm to do it all for you. They had my Social Security filed and approved in less then 30 days, which I didn't think possible. Also, if you do, think about regular Social Security for those who have become disabled. You receive more on that then you do on Supplemenetal Security Income. Plus, SSI, kinda makes it sound like this condition will heal and go away.

When you do, go on the basis of the day to day limitations imposed by lymphedema. When you do decide to think about a legal firm too. Generally, if they don't win, you don't have to pay. If they do win, the fee is usually the amount of one month of disability.

So very very glad you joined :!: There are a few of us here that have had LE for many decades and even some who have had those horrible surgeries too.

My Best to you :!: :!: :!:

Pat
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Re: Leg pain

Postby megthumm » Sat Jan 26, 2013 9:48 pm

Thanks Pat, I haven't decided. I went to see a lawyer, but they said I must be denied before they can help me with disability. It also takes 6 months before you can receive payments. I can't not get paid that long. I'm not sure what to do at this point. The cast boot is not helping the pain, and I can't work like this. I'm going to call my dr m
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Re: Leg pain

Postby megthumm » Sat Jan 26, 2013 9:49 pm

Monday and see what else he recommends. I'm so glad for the support. Thanks so much !
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Re: Leg pain

Postby patoco » Mon Jan 28, 2013 9:55 am

Let me know how you do!!!

I believe the attorney was incorrect about it taking six months though to receive your first payment. If my "elderly" 8) memory serves me correctly it only took a months or so for me.

Pat
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Re: Leg pain

Postby blubrdfrend » Tue Jan 29, 2013 9:29 am

I sent photos with my application for disability. I received a check the next month. I had been off work for three months waiting for the magic cure. I was hoping to go back to work. I really enjoyed my job. I did not use the legal system although I was in contact with attorneys on a daily basis through work. My retirement from the company is less than it would be if I had been able to put in more years.
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Re: Leg pain

Postby megthumm » Tue Jan 29, 2013 5:57 pm

I have started taking photos, the main problem with the disability paperwork for me is that my condition began at birth, and I read that I'll need all my medical records and doctors names since then.i know my surgeon passed away, and I don't know who originally diagnosed me. Is it really this intense ? I was hoping to go back to work also, as that seems the least complicated route. But my leg does not seem better. The swelling is down but the ankle pain is crazy. I have an appt Monday with ortho so I'll see what happens then. How do you afford stockings etc on disability ? I can barely afford them when I'm working. I need so much info. I have been in denial for a long time, and now I need to catch up on what I've missed. :)
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Re: Leg pain

Postby patoco » Wed Jan 30, 2013 10:24 am

Hey again :)

Don't forget to swamp them with how limiting the condition has become. Like you, mine started the day I was born. I uesd to be able to work full time, garden, all kinds of things you would never imagine I could.

Now just to get up and go to the wc (bathroom) is a massive effort.

If you can't find the doctors, don't let that stop you. Just about all the doctor I had early on are literally dead from old age.

Good solid records for the last decade or so should be sufficient. But, again, any decision will be based on limitations - hwo has lymphedema limited your abiity in your day to day life.

I sooooooooo wish you well on this, many many prayers going out for you as well from ALL of us!!!

BTW, those photos blubrdfrend spoke of are a super idea :!: :!:

Pat
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Re: Leg pain

Postby megthumm » Thu Feb 07, 2013 3:41 pm

Update, ortho said they have done all they can do. Sent me to pain mgmt. starting Neurontin 300mg. Any one taken this? They think my pain is due to pressure on my nerves, sending pain mssgs to my brain. I also got lidocaine cream, and Percocet for breakthrough pain. I'm scheduled to go back to work 2/18. Wish me luck !
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Re: Leg pain

Postby patoco » Sat Feb 09, 2013 10:00 am

You are in our thoughts and prayers :!: :!:

Are you getting excited about going back to work? I sure can't believe how much I miss it, myself.

At least the doctors are understanding that you do have pain. As I said with that main nerve running the entire length of your leg being squashed and mashed by the swelling, it's no wonder we have such pain.

My hospice nurse and I are in an argument about my pain meds. She wants me to increase them and even though I still have pain, I just don't want to increase what I am taking. The pain is manageable for me and the thought of taking even more prescrip pain meds just doesn't sit well with me....we'll see :lol:

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Re: Leg pain

Postby blubrdfrend » Mon Feb 11, 2013 1:34 am

Pat, you are making the world a better place. Many, many people have found information, relief and support on this site. We appreciate all that you have done. I wish that we could do as much for you as you have for us. We have reaped the benefits of your experience, procedures and pain. I believe in prayer and I am praying for you, Pat.
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Re: Leg pain

Postby patoco » Tue Feb 12, 2013 12:20 pm

Thanks so much for your kind words blubrdfrend. They mean a great deal to me :!: :!:

Thing is, that you all are one of the main reasons I do keep going. I don't know what I would do without my lymphedema family, my life would certainly be a lot emptier and lonelier.

Pat
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Re: Leg pain

Postby blubrdfrend » Fri Feb 15, 2013 11:55 am

I have some questions about pain medication. I am only using OTC pain relievers. I am at the point that they are not working well. If I take a prescription pain reliever will I cause injury to my leg? I can stay up 1 1/2 to 2 hours per day without pain relievers. I am not complaining. I am grateful for the years that I was able to walk and work. If I stay up longer I will have to remain in bed or my chair for a couple of days. If I take pain relievers I will not know that my leg is hurting. Will I cause injury to the leg by walking more than I normally would? If I am in pain and do not know it, will my leg get worse than it is now? Can pain medication aggravate lymphedema or will it remain the same regardless. Any advice will be appreciated.

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Re: Leg pain

Postby patoco » Fri Feb 15, 2013 1:11 pm

Hey Betty

Really really good question. The OTC pain relievers classified as non-steroidal inflammatory meds (NSAIDs) actually in and of themselves CAN cause swelling. I used some for years with any effect and then all of a sudden they did that on me. So I had to give them up. Upsetting, to say the least as Advil really did help with the pain.

I don't think prescrip meds would hurt your legs. You are probably going to have to go through what I did and that is to learn when to stop and when to keep going. LOL...for a double A personality like me, that was horrible :( :o :?

How do you drive a type A crazy????? Tie them down in a chair.

I think you would find that it really wouldn't make you do a whole lot more, but it would take the pain from what you actually do. For me that was a God send. Before I started on the pain meds, Betty, I came to a full understanding of why people shot themselves to get away from the pain. I can't even begin to express how bad it was - and - how wonderful it has been to NOT hurt that bad. Big improvement in overall quality of life.

I was grateful too for the time I could work. Put in thirty eight years in the workplace. Had a couple homes, raised a couple children.....did all kinds of everything I should not have been able to do. But, the seasons change and we have to adapt and change with them. God will give you the grace to make it through...

Pat

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Re: Leg pain

Postby blubrdfrend » Fri Feb 15, 2013 2:18 pm

Pat, I am sorry to continue to bother you. What medications worked best for you? Do you take sleep aid medications? If I am up very much I am not able to sleep because of the pain. It has been years since I have been prescribed pain medications. I did not realize that OTC could cause swelling. Thank you for the information.

I can only watch so much TV. When spring comes I will be filled with anxiety. My son suggested a pot garden ( not the kind you smoke, although it is a thought) or raised beds. I will probably try it. I do hand quilt and there is always Words With Friends and Mindjolt.

A relative (by marriage) recently ask me why I don't have my leg removed. She needs her head removed.
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Re: Leg pain

Postby patoco » Sat Feb 16, 2013 10:16 am

Hi Betty

LOL...she sure does need her head removed. Good grief some solution.

My prescrip for pain include hydrocodone and the Fentanyl patch. The patch is common for cancer patients and the hydrocodone helps in the pain "surge" times.

I am now trying Ambien for sleep. But, sleep medicine for some reason just doesn't work for me, so I am about ready to ditch that one. If I take OTC sleep aides, it can have the opposite effect on me. It will totally wire me, so that's out.

Like you, I get the real itch in the Spring. I went from having a huge raised bed garden finally down to a container garden. I grew tomatoes, zuchs, yellow squash and an assortment of flowers in big pots. I did have a small trellis that I grew a couple types of cucumbers and pole beans. You would be amazed at how much these container veggies can grow. Now I have had to even give that up though and I really really miss it.

Pat
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Re: Leg pain

Postby blubrdfrend » Sat Feb 16, 2013 4:07 pm

I will ask my physician for Hydrocodone. Thanks for the garden tips. I will be trying the container garden. I will let you know about my garden.
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Re: Leg pain

Postby patoco » Sun Feb 17, 2013 11:24 am

That's exciting...can't wait to hear how the garden grows :)

BTW, for soil, I just use the bagged compost/manure combination.

For fertilizer in a container, I use the liquid Miracle Grow....whoa......you should see what that stuff does to tomatoes :o

I have to tell you, I got such a kick out of my son in law. He was shocked as this was the first time he ever saw a lot of the vegetables growing. He was especially surprised to see the broccoli. My grandson was funny too, he was hesitant to eat a yellow tomato. He says, "but grandpa, tomatoes are red not yellow."

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Re: Leg pain

Postby blubrdfrend » Tue Feb 19, 2013 1:21 pm

Pat, I am making notes on your garden tips. I will get the soil and fertilizer that you suggested. What size pots did you use and where were they placed. I have 1 W X 1 D and 3 ft long concrete pots on my front porch. Will they be large enough and deep enough to grow vegetables? I am also trying to find the old garlic to plant in my flower bed. I have the wild garlic but it doesn't hold it's flavor during cooking. Garlic, tomatoes and sweet onions are on my list. For you, I will try yellow tomatoes. I have never eaten one. I have seen them in the grocery store but I always figured that they were grown for people, Up North. I have never tried to grow broccoli. I have the instructions for an earth box growing system. My son brought a rain water tote that holds 330 gallons of water. We will attach it to the gutter and I will be able to use rain water on my garden.

I went to the doctor yesterday. I have been chair bound for a week. He said that because the leg was swelled, red and warm that he could not tell if there was a blood clot. I had a venous Doppler ultrasound on my leg. I should get the results today. He ask if I had been on a plane or if I had remained in a sitting position for several hours at a time. I have done neither. I have no idea what caused this. I have also gained several pounds while sitting here.

Betty
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Re: Leg pain

Postby patoco » Wed Feb 20, 2013 11:33 am

Hi Betty

That's pretty scary, please don't do anything until you have heard on whether or not you have a clot. That's a major concern for many of us.

I use 5 gallon buckets, filled to the very brim with the soil mixture. Smaller buckets wouldn't have enough soil for tomatoes or the larger flowers. LOL...glad you are gong to try yellow tomatoes. You can go for either the big yellow, small cherry-like yellow or my special favorite yellow pear tomato. it is a small tomato about the size of a cherry, but shaped much like a pear.

Using rain water will be great - far better then the ole city water I used. That stuff has so much chlorine and stuff in it, that veggies and flowers don't like it much. You'll love this too, just wait til you see the little hummingbirds flitting about and the butterflies flying all over everywhere. I had a mess of lizards too, little chameleons that were my main "bug" eaters.

Nothing like the taste of garden fresh produce :!:

Pat
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