Update Mystery ailment: Lymphadema

vickeym
vickeym Posts: 2,116 ✭✭✭✭✭
edited January 19 in General Health

Back in February of 2023 I found a lump on my lower shin. Maybe 1 1/2 inches long, 1/2 inch wide, fairly red and slightly swollen. It had a mild tingly feeling when touched, like your foot falling asleep.

Since then the doctor has tried a course of antibiotics, a course of steroid cream, done 2 ultra sounds, a vein test and a biopsy.

The swollen area now is about 3-4 inches high and reaches at least half way around my leg. I'm scheduled to see a dermatologist on the 19th of this month.

One of my clients has lymphadema and this seems similar so I ordered a lymph support powdered herb blend from Doc Jones. Made a tincture of it and take that about 5 days a week. With no improvement there either.


I'm at a loss to understand what the cause might be. Thought I do now understand why they call it practicing medicine.

Tagged:
«1

Comments

  • Torey
    Torey Posts: 5,641 admin

    I'm sorry to hear that its getting worse, Vickey. I suppose it could be lymphedema but you would think that they would have been able to diagnose that. Lymphedema isn't usually red, just swollen, but different people might present differently.

    What does it feel like to touch? Soft? Spongy? Hard? Tight? Is there any heat involved? Is it still tingly when you touch it? Does it respond back when pushed or does it stay indented? Is there any pain or discomfort involved?

    My aunt had something similar but it was on both legs. Finally discovered it was an allergic reaction to something in a pair of leather shoes that she had recently purchased. But as your situation is only on one leg, its not likely to be an allergic reaction to anything.

    I hope the dermatologist is able to shine some light on this.

  • Michelle D
    Michelle D Posts: 1,465 ✭✭✭✭✭

    @vickeym I hope that you find answers soon. I will pray for you.

  • water2world
    water2world Posts: 1,162 ✭✭✭✭

    @vickeym Please keep us posted, my curiosity is peaked. Hope it is soon resolved.

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭

    @Torey The red area is quite hard. The rest of the swollen area will indent but the indent fills back in in less than a minute usually. The tingling is now more of a pain than a tingle, and there are times when it throbs or is just painful without any touch. There may be a swollen area on the right leg now (or my imagination over reacting after almost a year of no answers)

    The odd part is that the swelling on the left leg is in a band about 4 inches high and now at least 3/4 of the way around the leg.

    About the only thing they have been able to tell me so far is that it is not fungal or cancerous. Both good to know, but still no idea what it may be, while it continues to get larger.

    @Michelle D and @water2world Thank you both. Hoping there will be something to share soon. I got my date wrong and my dermatologist appointment is on the 18th not the 19th.

  • shllnzl
    shllnzl Posts: 1,820 ✭✭✭✭✭

    I'm guessing wildly here, wondering if you have a microscopic parasite? Lyme disease comes to mind as well. Getting an antibiotic out into the flesh is difficult, and parasites are known to create a biofilm that protects them from antibiotics.

    I feel for you. Good luck.

  • shllnzl
    shllnzl Posts: 1,820 ✭✭✭✭✭

    I'm doubling down on the parasite idea. I just don't know if a parasite cleanse taken orally will reach the leg tissue.

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭

    @shllnzl never occurred to me that it could be a parasite in the tissue. Will be researching that idea as well. Thanks for suggesting it.

  • Karon
    Karon Posts: 17 ✭✭✭

    I thought I’d responded on this but don’t see it, sorry if a duplicate…

    could it be a ganglion? Most usual found on wrist area but can be found on legs too. I know someone who had a lump on their leg the doctor thought was a ganglion but upon further thought decided best to do a biopsy to rule out cancer…very thankful it turned out to be a ganglion most likely caused by new shoes.

  • SuperC
    SuperC Posts: 951 ✭✭✭✭

    @vickeym a friend had a circular disc that was hard behind his knee. What he did surprised me. He would wet a bath towel and place it in the freezer. Next, he boiled water on the stove and submerge the towel. He had built up a tolerance for laying very hot towel onto his skin. In about four weeks he saw improvement that it began to shrink in size. He did this for two months everyday. One day, it was gone, and he became pain free.

    Oh i sure hope you find answers or methods to reduce this unwanted lump.

  • LaurieLovesLearning
    LaurieLovesLearning Posts: 7,519 admin

    So, with all the recent ideas, I wonder if an herbal poultice that might target some of these types of things in the ideas would work. What @SuperC suggested is essentially a poultice.

    I know that often a warm wrap of castor oil on cotton cloth, and wrapped further with plastic wrap to keep oil off of sheets/clothing, is said to help heal many things. Herbal poultices can also be a direct way of getting what you need where you'd want it.

    @Torey Based on the past few posts above, would you have any ideas that @vickeym could experiment with?

  • Torey
    Torey Posts: 5,641 admin

    To start I'll comment on all the ideas given above.

    A ganglion is usually found on joints, particularly the wrists and other joints in the hand but also on the ankles, feet and knees. As this is on the shin, I don't think it is close enough to a joint to be a ganglion.

    Because Vickey is in Alaska (and hasn't left recently), I wouldn't think Lyme or other parasites are the cause in this case. Lyme hasn't been found that far north and other parasites tend to be tropical or sub-tropical. The most common one that causes swelling similar to this is filariasis. It hasn't been found anywhere in the US.

    However, both ideas are worth bringing up with a doc just in case they haven't already ruled them out.

    I'll wait on offering suggestions on herbal applications until after we hear back from the next doc just to be on the safe side in case there are any contraindications with a new diagnosis. A castor oil pack might be a good place to start, maybe with some herbs added in. However, let's ask @vickeym about the hot and cold. Vickey, are you finding any difference with applying heat as in a shower or bath? Does the heat irritate or soothe the area? Or do nothing at all? Have you tried any cold treatments? Is there anything else that seems to aggravate or assist? Is it worse after being on it? Is it any better in the mornings after sleeping all night or does that seem to increase the congestion in the area?

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭

    @Karon I have a ganglion on my wrist. This would be a huge one with periferal swelling.

    There is a hard red area about 3" in diameter now. Plus, about a 3-4" tall area almost all the way around my leg (including the red area) that is soft, but swollen. Raised close to an inch above the surrounding skin. Started as about 1" x 1/2" hard red spot, maybe 1/2" high, with no other swelling.

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭

    @LaurieLovesLearning I have not tried the castor oil wrap yet. To be honest I forgot about them.

    @Torey hot and cold don't seem to have any effect on it. Wearing any socks less than knee high will move the swelling sometimes. Moving it higher on the leg if the top of the sock is tight and right at the lower area of the swelling.

    Knee high compression socks which I have worn for about 3 years, have little effect. Being on it a lot will sometimes make the leg swell more, sometimes even the feet. Used to have swelling in feet and legs all the time. Didn't go down. Used homeopathic remedy apis mellifica 200c once (water remedy), swelling went away, waited and about 15 days later feet started swelling again. Took one dose in 30c swelling went away. Happened once more around 15 days later. Took another dose at 30c. Never came back.

    It was a few months later I noticed the small red lump. After about a month went to Dr. To get it checked as it was not going away.

    Appointment on the 18th is with a dermatologist

  • SuperC
    SuperC Posts: 951 ✭✭✭✭

    Boy, we all sure hope your dermatologist will have an answer.

    You mentioned that when you wear kneehighs, the swelling moves, and that’s unusual

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭

    @SuperC I hope so as well.

    Not sure if the swelling moving, is actually moving or if the compression socks are actually making the rest of the leg swell to be bigger than the constant spot. Doesn't swell up without them so unlikely, but not ruling it out.

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭

    Well, I got my diagnosis. It is lymphadema. They are telling me I will need to go to this place that does hydro- therapy 2-3 times a week. It is about 75 miles each way.

    Time to start researching more and see what herbs and homeopathy can do. Been using the lymph support tincture from Doc Jones. Very spicy but will figure out how to get even more of it in me.

    Now to see what else I can do myself.

  • Torey
    Torey Posts: 5,641 admin

    Well, at least you now have a diagnosis and can get on dealing with it. Following is a list of herbs that are generally recommended for lymphatic issues. You can pick and choose as to what is available for you. Reishi is a good place to start for overall health.

    Red Clover, Cleavers, Calendula, Red Root, Burdock, Wild Indigo, Violet, Reishi and Essiac Tea. The last one is a combination tea.

    Because the lymphatic system doesn't have its own system of movement, it is influenced by exercise and the actions of the circulatory system. Making sure you have adequate venous and arterial sufficiency will help. So things like hawthorn, pine bark extract, gotu kola, horse chestnut, hibiscus or ginkgo.

    Once you have a hydro therapy treatment, it is probably something you can do for yourself. One appointment would be able to give you some idea of what to do. 75 miles is a long way.

    I'll send you a PM with what my homeopathy program has to say.

  • Michelle D
    Michelle D Posts: 1,465 ✭✭✭✭✭

    @vickeym I'm glad that you finally have answers. I hope the suggestions help and you can find some relief.

  • water2world
    water2world Posts: 1,162 ✭✭✭✭

    @vickeym Thanks for posting this update! I had been wondering if you had finally gotten a diagnosis! Is it always a relief to know what you are dealing with.

    Torey has some great advice, in fact, I have copied it for my mom! Thanks @Torey

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭

    Thank you all for your support, concern and help. I'm sure it will be a long journey. I find it interesting that it has taken almost a year to get the diagnosis when the PA

    I have been seeing is treating a client (and friend) of mine with a severe version of this same condition. And I even discussed with her the possibility that it was that condition.

    Oh well, now I know and can move forward. I am determined to keep it from getting as bad as hers. She can barely walk and frequently needs crutches. Has the hydro therapy a couple times a week plus compression sleeves she has to use that use a machine to pump air into chambers working their way up her legs.

    I also found this is the condition or disease referred to as elephantitis from the movie the elephant man.

  • LaurieLovesLearning
    LaurieLovesLearning Posts: 7,519 admin

    @Torey @vickeym I was also wondering if properly done lymphatic massage &/or light brushing would also help at the stage you are at? I could see this as being relaxing at the very least.

    I hope you can get this in check, @vickeym. I've seen pictures of the condition at severe stages and I think it would be a very difficult thing to live with mentally, physically & socially.

    Keep us updated on your progress & let us know what you find is most helpful.

  • Torey
    Torey Posts: 5,641 admin

    Dry brushing is often recommended as a self care technique, especially in the early stages of lymphatic congestion.

    Lymphatic drainage is a massage technique that involves very light touch. You don't want to do any actual massage as this can easily crush the lymphatic vessel that you are trying to move fluid through. This is a link to a description of how to do lymphatic drainage.

    If there is someone close by that does this sort of treatment, it might be worth paying for a treatment to see how its done and if you can accomplish this by yourself.

    A relative had several lymph nodes in her leg removed due to cancer and was having issues with swelling. It was recommended to her that she try one of those mini trampolines to exercise the legs and get the lymph moving. I think they might be called rebounders.

    I'm thinking that a topical preparation of something with cayenne in it might help improve blood vessel circulation in the area, thereby assisting with movement in the lymphatic system. At the very least it will increase circulation to ensure the surrounding tissues will remain healthy. Definitely try a skin patch test first before applying a lot of it.

  • LaurieLovesLearning
    LaurieLovesLearning Posts: 7,519 admin

    @vickeym I was just watching a video on this that came up in my feed. I often read comments below those. Sometimes that's more informative than the video itself.

    Under this video, on person commented that their relative found that eastern medicine tended to work best for them. It should be something to consider looking into.

    Diet changes were recommended by more than one person.

    Someone else suggested that if it is in the left leg, to get checked for May Thurner Syndrome, which this particular commenter has.

    Now, I know that online videos are not the recommended nor wisest places to go for anything, but thought that these bits might be of interest.

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭
    edited January 22

    @LaurieLovesLearning and @Torey@Torey thank you for all the information. Yes, they are called rebounders. Have been seeing those as well. Was just waiting for an actual diagnosis since they run $80 or more.

    The therapist here locally says they do know the lymphatic massage and I am reading about dry brushing as well. Will need to get a better brush for it than my hairbrush. I think we are going to town on Saturday, so I might find something then.

    I have a tube of hypericum & calendula cream I have started putting on it. I wonder if I dilute the lymph tincture I'm drinking from Doc Jones would make a good spray for it. It has calendula, cleavers, devil's claw, echinacea and cayenne.

  • LaurieLovesLearning
    LaurieLovesLearning Posts: 7,519 admin

    @vickeym You're welcome. I wonder if you could contact Doc Jones & ask? Often treating something both from the inside & outside is the best course of action.

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭

    Can't hurt to try. Eve if he doesn't answer himself, someone in his family or employ could advise and I know he uses a lot of his tinctures to make a spray to use instead of poultices, especially on animals.

  • Linda Bittle
    Linda Bittle Posts: 1,515 ✭✭✭✭✭

    @vickeym I hope you find relief soon!

    I checked Rosalee's website, and typed lymph into the search box. She has monograms of several herbs good for the lymphatic system.

    Cleavers Herb (herbalremediesadvice.org)

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭

    @Linda Bittle thank you, I'll go check them out. Right now I'm using a tincture I made from Doc Jones lymphatic support blend. I ordered the powder and made my own as it gave me a lot more for the price than buying the tincture.  

    It has calendula, cleavers, devil's claw, echinacea and cayenne. Seems like a LOT of cayenne. Lol I have to mix it in tomato or V8 juice and follow it with milk. It is too hot for me. But I have to take regular breaks from it as I get very bad heartburn. Not sure if that is from the cayenne or all the tomato juice.

  • SuperC
    SuperC Posts: 951 ✭✭✭✭

    @vickeym Thank goodness for @Torey ‘s knowledge and, thank you for sharing about these herbs to help heal lymphatics.

    I LOVE TGN and all of everyone who contributes their ideas and wisdom!

  • vickeym
    vickeym Posts: 2,116 ✭✭✭✭✭

    @SuperC I agree. I have learned so much from everyone here and it has been such a blessing learning to deal with or handle the health issues we have been dealing with, as well as all the other information here.