I am happy to have found this location online where people with this condition are coming together to share info. I have been dealing with this for over a year but just recently got a firm diagnosis. It will help for me to summarize the last year's events and what has led up to this point.
In April of 2012 I had been working a lot, as I had started a small business in January and was looking to succeed. All winter (Jan,Feb,March) I had been coughing a nagging "winter cough" and when it did not go away by April, I decided to go to a primary care doctor recently assigned to me. Overall, I did not feel good in general, but blamed it on overwork, cold weather, drafty apartment. etc. So the PCP refers me to a Pulmonologist and Cardiologist for tests. I am concerned slightly since I had once been told (early 30's) that I had a weakened heart muscle which would likely turn to CHF (Congestive Heart Failure) later in life, and I just turned 40. The Pulmonologist was fairly certain it was CHF and sent me on to have an Echo with Cardiology. The Cardio doc told me absolutely not - heart is fine and no problems there. I was experiencing "edema" along with my other symptoms and he stated this must be caused by something else. I have Hypothyroidism as well so I wondered if it could be that.
In the midst of this, in late April, I got what I thought was a flu. My temp was up around 104 for several days, and toward the end of the week I had it, my leg (left) felt odd...heavy and sore. Overnight, on Friday, I began to feel swelling in my thigh and by Saturday it was enormous swelling, in the groin area. When it began to weep, and my fever spiked again over 104, I went to the ER. I was quickly brought into surgery where a huge portion of soft tissue on my left thigh was removed. I had Necrotizing Fasciitis. I spent one week in ICU and then spent two months in a Rehab facility for wound care (that is one huge wound). While in rehab, two things started happening. Swelling in my abdomen started, and also in my left leg, especially when I had PT or walked about. No one seemed overly concerned about it since my wound was still healing and I did have a wound vac, which could account for the swelling.
Once home, I had home nursing for another two months - swelling continued to get worse. I was so puzzled because I was unsure whether to make my leg work with exercises and walking, or rest and elevate while the wound healed. I was advised to rest and elevate. I got help doing chores and such, as I live alone. I elevated a lot and walked very little. My leg got worse as my wound got better, and more disturbing to me, the abdominal swelling got more and more intense. I was overweight before the NF struck, and now I was gaining weight from inactivity but also experiencing this swelling (which was starting to feel quite hard on my abdomen). I went to the PCP and they were clueless for lack of a better word. This was frustrating, and I went on to see the surgeon again, for some insight. They ordered an ultrasound of the abdomen, but it came back normal (?) This is the first time lymphedema was *suggested* but I was told a PCP would have to diagnose it!! Ok. Time to switch PCPs (which I did, twice).
BOTH TIMES...each PCP had no clue. By now, we're in January of 2013 and I've just been told that I need to exercise and lose weight, and in response to my huge foot and leg, and hardened mass across my abdomen, that this is common when obese. Really? I was so upset I cried in the car the whole way home. Something was wrong and these ppl could care less, and were clueless. I filed a complaint on this PCP as she had barely examined my abdomen, and I was given such a flim-flam answer. She is an internal medicine doctor, and that was the best she could do?
I got very depressed (more than I was) and started to just accept that I was stuck with this horrible swelling. I started coughing again, and was feeling completely crappy. The Cardiologist had given me Lasix for when I was really edemic so from time to time I would pop one and have slight relief, but the swelling never went away, and my foot on the left leg was really starting to look disfigured.
April came around again...one year since the nightmare of NF surgery and that whole fiasco. My leg started to hurt and I got a little nervous...for good reason, as it quickly got fiery red and sore. I was at wits end and also just completely out of gas with all that has happened. I called the nurse hotline the hospital has, to see if these symptoms warranted an ER visit, and the nurse said yes, ASAP. 911...Ambulance to the ER...I was tested all day long for things, then admitted. I wasn't told I had Cellulitis till the evening, but I was pretty sure that is what it was. I had it once before since my surgery. This time, they admitted me for a week of IV antibiotics. I also had a lot of tests during the week and was officially told I had lymphedema. I was very sad it took till my leg was double the size of the other leg and my foot not even looking like a foot before I was DX'ed. From all I have read so far, this isn't so uncommon, sadly.
I was discharged with an order to see one of the hospital's therapists for Lymphedema treatment and also to get connected with a new PCP. This is the hardest thing of all...I don't trust doctors a whole lot after being misdiagnosed by SEVERAL PCPs! However, the therapist can't write a treatment plan without a PCP to follow it with me. I do believe this treatment may help so I need to play the game.
I am walking so poorly now and I have NO endurance. I get out of breath with a short walk from the car to the doctor's building. I also have a lot of pain and issues with my leg. I find it near impossible to lose weight without exercise, even eating in a very disciplined way with low to no salt and watching sugar intake, etc. I am barely maintaining my weight by doing this. I also have no idea how much I weight as I am dealing with swelling, fluid retention etc. My abdomen is actually the worst. The Lymphedema Therapist (I've had one visit) was not sure she could do compression on my leg(s)? since she did not want to exacerbate the abdomen. Now what? She also told me the abdomen is very difficult to compress. In her voice, she sounded defeated before she has even written that needed treatment plan.
I think I have missed a lot of spots in this story, but this is it for the most part. I am disabled from this entire experience. I can't believe that my life will "end" this way so I have to have some hope things will improve, and the solutions will reveal themselves. In the meantime, I keep reading and hoping for insight from anyone willing to give it. I have pleural effusion and now am on Oxygen 24/7. Breathing is sometimes hard. I sleep hardly at all. Psychologically, I am a mess and struggle to not be in deep depression. I am only 41 and I just can't accept this is all I have to look forward to. This last year of my life has left me in shock, almost. It is hard to explain, but writing it out like this helps.
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kozmicNM
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Thanks for sharing - it is truly a sad story. many of us have had similar struggles to get to the bottom of this condition before we could begin to understand and overcome it.
You have very eloquently explained the history of your condition and I want you to know that you are not alone. There are many sufferers who will help you by sharing with you in your fight to overcome the problems and the depression.
You have made a start and as you stated, it helps to unburden yourself by writing it down and posting it here. There are several other helpful sites on Facebook where Le people network and share useful information . . .
Thank you for the kind words, and also the FB link. I am slowly but surely making my way around the internet, seeking out people discussing lymphedema, or any kind of resources, etc. So that is very helpful.
It is kind of funny that I develop NF, a rare bacterial infection (never even heard of it) then ultimately get LE (and I know of no person who has this, either). So it is great to find others online who are willing to share information, or just vent. It does feel better to get it out and know there are others dealing with this (though I really don't wish it on anyone).
One thing I left out of my blog post is how the LE Therapist made a comment to me about she suspects I've had lymphedema before I even had that invasive surgery that seemed to be the catalyst to set it off. I wonder if others have heard a speculation like that. I wonder if she is right, as I have had "edema" over the years but assumed it was simply water retention or my Hypo acting up. And, never had I ever had swelling in the abdomen before surgery. I don't read a whole lot about others with abdominal swelling...makes me a little nervous.
I am located in New Mexico, in the U.S. I am originally from Connecticut, on the East Coast.
So glad you found us kozmicNM, love the user tag btw, you are geographically afar but close on this page. Disressingly our UK GPs are no better informed than your PCPs. The LSN has developed a learning module on lymphoedema for GPs and I think they are monitoring take up. You might find a similar network nearer you. Problem is that people with LE often isolated as no one in their circle of friends/family has heard of it. I spend a lot of time giving a brief explananation! Do hope you can find LE specialist with more of a positive approach to treating abdominal and leg swelling.
Hello lovesradio, and I am happy to have found this community too. It is interesting how the bulk of posts seem to generate from the UK (was the site developed there maybe?) Even just reading through questions and blogs has made me feel less alone in dealing with this. I can really relate to no one 'getting it' with LE (and the NF I had) and needing to explain with quite a bit of detail. The biggest questions seem to point at why I am not working, or why am I back in the hospital.
Thanks for sharing your story, it's very sad Are you wearing medical support stockings and panties to help your Lymphoedema? Yes the abdomen is a difficult area to compress but there are garments out there that are worth trying. I have leg and genital LD and find that the garments do help, especially with the leg. Isit just the abdomen or is it also the genital area too? Have you been offered MLD(manual lymphatic drainage) as that can be very effective in reducing the swelling and encouraging the lymph fluid to areas where it can be expelled by the body in the normal way. There should be an MLD practitioner available somewhere. Maybe you could look into that. There may be Lymphoedema specialist consultants that you can get a consultation with. I have travelled approx 100 miles to see one that knows what can be done. Here in the UK, work is being done in liposuction techniques that can reduce limbs back to their normal size. I am waiting for word to get this operation done. Don't give up, keep trying to find people that know what they are talking about and ask to be referred to them. Hope this helps. Don't give up hope.
I hope I didn't bring you down with my blog post (I guess I am so used to the situation at this point). I have had just the one therapy session so far, and was told that any kind of leg compression would only force the lymph back toward the abdomen at this point, and that they wished to start with abdominal...though there is no treatment plan written yet. I do not have any genital symptom yet, but I have been panicky lately as my left arm is feeling very heavy, and sometimes with a slight burning feeling...I don't even know if it is possible to get LE in both legs and arms too? I am almost scared to ask.
The therapists did mention something about figuring out a solution for the abdomen, so maybe that will be panties to start? I am huge in that area at this point, I was about a size 16/18 last year, and the only pants I can zip now are a size 26, or sweatpants. This is all swelling in the abdomen mostly, and torso, not to mention the legs. I had no idea Lipo was a solution for LE...I will be looking for more info on that, and looking for your updates too. Keeping up hope!!!
No you didn't bring me down, but I do feel for you in this situation. I would think that MLD would be good for you as it massages the areas affected to move the lymph fluid on thus reducing swelling. If you wear compression on both legs and abdomen together they should work together. Hope you manage to find out more about lipo. Good luck.
Like you I have been undiagnosed & untreated so I have some idea of how awful you must feel and you have my sympathy and good wishes. After a couple of years of stress and pain I have finally found a lymphodema therapist and she is terrific. I am feeling so much better already because I have had some appropriate treatment and a plan made for rehabilitation. I just hope it all works. I am sure you will find the right therapist and get the treatment you need too. Keep pushing and try to stay positive. You will find helpful supportive people here who will help if they can and it's good to know we are not alone. Good Luck on your journey. Nan
Like you I have been undiagnosed & untreated so I have some idea of how awful you must feel and you have my sympathy and good wishes. After a couple of years of stress and pain I have finally found a lymphodema therapist and she is terrific. I am feeling so much better already because I have had some appropriate treatment and a plan made for rehabilitation. I just hope it all works. I am sure you will find the right therapist and get the treatment you need too. Keep pushing and try to stay positive. You will find helpful supportive people here who will help if they can and it's good to know we are not alone. Good Luck on your journey. Nan
thank you for your kind words, and I am happy to hear you are feeling better and how much the therapy can make a difference. I am praying I do find the right person. Maybe it is the one I've met with, I owe it to her for a second trip to see if I was wrong in my perceptions. We will see, and I will update this blog.
what a horrible time you've had, sorry to hear things have got so dire
ideally, a lymphoedema therapist who's a bit more confident than the one you've met would be good, wouldn't it? is she part of a team? would it be possible to say that you'd like to meet one of the others so you can work out who's best for you
yup, we are mostly in the uk but that's the beauty of the net, it doesn't matter where you are! good to hear about how things are in different countries, too
the lymphoedema support network is a uk-based charity - have a look at the main site: lymphoedema.org/ & they've got a link to the american one: lymphnet.org/
but don't go there & stop coming here!
be good to hear how things go, i really hope you get something from the therapist(s)
ahh Ok, now I see! the more resources, the better for sure. this place is friendly, so I will stick around lol
I am unsure if there were any other LE experts in the therapy center I visited, but I did finally break down and choose a new GP, and I meet next week with them. They will be signing off on the treatment plan, so we can discuss picking out someone else, esp. if the treatment plan sounds off in any way. We shall see next week. Thanks for the good wishes, I am anxious to start the therapy, though scared at the same time.
i love this thoughtful post, thank you. I can assure you, NF is bizarre and while it kills its victims about half the time, sometimes I feel like I just survived it for the time being, and it is slowly still trying to pick me off. I try to keep a light attitude about it because it is serious, and it often does break down organs and such. So far, I am pretty sure the LE is a result of the surgery and not any underlying issue with kidney or liver, but I could be surprised. Docs are so slow to evaluate anything related to this.
re: GMOS/eating raw/organic, I am grateful for the links, and luckily I am on top of this issue (as much as can be). It is an issue here in the U.S. esp. the GMO issue. I wonder, have you visited a naturopath or holistic medicine doc in relation to your LE? I am considering doing it, though I imagine a lot of their protocol would be what you suggest diet wise. I fast about 4 times per year, for 2-3 days on water. I had a hard time fasting after surgery and rehab due to the large amt. of toxins I had inside. So this year I was able to fast for 6 days on pure water, about two months ago. I noticed a good difference in my legs, esp my "good" leg in that longer fast. I have often wondered if a longer, doc supervised water fast could help clear the lymph fluid. I don't think I'd attempt a long fast without doc supervision, though it is hard to find that here. Most docs want nothing to do with it.
I will look into the compression site, esp. after I start regular therapy. I notice when I wear anything tight fitting around my midsection/abdomen, fluid tends to collect in my "good" leg, along w/ furthering the left leg swelling. Sometimes I wonder if I am going to drown in this fluid. sigh.
oh, i'm so pleased you've done that kozmicnm - you shouldn't have to, but i guess doctors are human too & you need a good one if you're a lymphie
if your treatment includes manual lymphatic drainage (mld) then don't be scared - it sounds a bit horrific, & everyone i know assumes it means i'm going off to be tortured, but actually i lie there & get a very, very gentle massage-like treatment with some good deep breathing thrown in
doesn't hurt at all, honest (if you've got hard, fibrous bits then they do go at those bits with a bit more gusto, but only as much as you can cope with
hopefully they'll also teach you simple lymphatic drainage (sld) which is a simpler version of mld you can do at home - the lsn here in the uk has a dvd you can buy if you scroll back up to the link to their website, but i don't know if it's compatible with usa dvd players
i just put it in the laptop so i can see it while i'm lying down
& hopefully they'll give you good advice about what activities would be useful, weight management .... without bombarding you
let us know how you get on - i've got my fingers crossed that this next physician's really good
since the LE Therapist did give some breathing exercises to me to start, I am guessing the MLD will be part of the treatment plan. Your description makes it less intimidating sounding! If all goes well it'll be next week w/ the GP and at least one LE Therapy session. Thanks for the crossed fingers...
Don't fret about the MDL, I have now had 3 sessions and have found it surprisingly relaxing and helpful. Mostly very gentle stroking and a wee bit of stronger action on the fibrotic (hard) areas of my breast which was damaged by the radiotherapy i.e. most of it!!. The therapist is very supportive and has measured me for a compression garment, which sounds a bit threatening but she assures me it is very soft inside and won't stress my very tender boob.
She is also teaching me SLD which is gently stroking myself to encourage the lymph to find other routes to circulate back into my system. I don't see much difference yet but it is early days and she seems very confident that it will make a difference to both the size and the pain level. This morning it was extremely itchy and I felt I could have clawed it until it bled but after a treatment it has calmed down wonderfully.
Pretty much the same here....different details here and there but the same story. The disability is awful. Plus I have a failed hip fracture repair and can't walk. The shortness of breath keeps me from doing anything. I'm too short of breath to even cry. And a good cry might help.
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kozmicNM
Are you wearing medical support stockings and panties to help your Lymphoedema? Yes the abdomen is a difficult area to compress but there are garments out there that are worth trying. I have leg and genital LD and find that the garments do help, especially with the leg. Isit just the abdomen or is it also the genital area too? Have you been offered MLD(manual lymphatic drainage) as that can be very effective in reducing the swelling and encouraging the lymph fluid to areas where it can be expelled by the body in the normal way. There should be an MLD practitioner available somewhere. Maybe you could look into that. There may be Lymphoedema specialist consultants that you can get a consultation with. I have travelled approx 100 miles to see one that knows what can be done. Here in the UK, work is being done in liposuction techniques that can reduce limbs back to their normal size. I am waiting for word to get this operation done. Don't give up, keep trying to find people that know what they are talking about and ask to be referred to them. Hope this helps. Don't give up hope.
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