Lymphedema

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Mighty Family!!!! I have missed you guys so much and thought and prayed for you daily ❤️

Months ago I was at my very worst. My health had gotten so poor that I was fully bed bound and unable to do anything on my own. I also needed constant care with my memory getting so bad I forgot my name, who my family was, all friends a missing blavk hole where they should have been in my memory. I kept getting lost and confused not remembering basic words and my hands were still excruciating with their inability to work getting even more drastic. My pain was a 10+ though doctors only think pain is a 1 to 10 we know it still can rise to the thousands.

Suicidal thoughts were so bad I was actually planning though losing a best friend's to suicide at 15yrs old still kept me and will always keep me from taking a step no one can come back from that haunts family and friends and leaves things so very messy and heartbreaking.

My so-called pain doctor was still doing nothing after 3 years and countless appointments begging for help I'm any form. He kept me on the same teeny tiny dose for years and wouldn't try any other meds or any other options. I had had no episodes ever of overdose or failing any drug tests but still he refused to help at all despite my first appointment with him where he promised to help me get to where I could shower and dress myself daily.

I wanted to ditch him as my doctor soooo many times despite him being my third and last option since we hadn't been able to find any replacement.
I realized the stress and misery he brought me always and especially after every three month appointment. It wasn't worth the useless dose of medicine I was on. Many doctors left me in a lurch to taper off my meds on my own. I knew how to do it so I called and said I was dropping him as my doctor. From that moment on I felt relief like the biggest weight was gone. Yes my pain was excruciating but my mental health was the biggest mess because of so many doctors refusing to help and leaving me since I was 'too complicated for them'. They just didn't want to put in the work at time.

Why be a doctor if you don't want to help anyone?!

Steadily my mental health improved immensely. I had moments where I was happy though still in pain. Naturally I am a very optimistic and happy soul but moving to a new state and having the cruelest doctors unsurprisingly made me so much worse.

I have a home health nurse that actually wants the very best for me and that was priceless and enough.

And then I got a brilliant and lovely rheumatologist who actually asked intelligent questions, explained answers, and was invested in taking as much time as needed to finish solving my health. He UNDERSTOOD!!! And at my second appointment with him he told us the answers we had been searching for for 17yrs! Since I was 13.

On top of my many inherent diagnoses I had psoriatic arthritis spine arthritis, and rheumatoid arthritis!!!!
The thing that we all thought was lupus but just barely didn't fit was the psoriatic arthritis!
It was the last piece of a puzzle we had tried solving many a time.
Interestingly I had finally narrowed my research to these diagnoses and was months away from figuring it out too.
But I was very happy to have the answers early!

My first appointment with the rheumatologist he gave me arthritis medicine and WOW did it work and so much better than any medicine my hundreds of doctors over the years had tried.
My hands improved!!!! I had feeling in them again and was able to do so much more than I had since I was 16 when I had my waist down reconstruction surgeries that would lead to arthritis all over my body especially to where I was completely unable to use my hands by 17. It was so embarrassing and painful that my body seemed so intent on not working eight. Oh how I just wanted you be normal!!!

And my last but of good news is I at LAST got a new pain doctor after being without officially for three months. My mental health anxiety and depression had improved so that my stress and thereby my pain had decreased to #9 on the pain scale!!! After being a 10 for almost 8 years!!!!!

My new pain doctor was COMPLETELY the opposite of my last one.

From a guy who ALWAYS worse fancy suits and thousand dollar shoes to one in jeans and a t-shirt.
From a guy who never smiled and wouldn't put in time and effort to a guy who smiled the whole appointment and was ready and Excited to put in the work to help me live my very best life!
From a guy who was too proper and cold to one who was so friendly and happy about his job.
From one who was terrified of any teeny hit of using medicine to one ready to take any risk if it meant helping his patients be safe but with less pain.

My new doctor was like the twin of actor Vin Diesel and he was so SO SO tall!
Even better since the drive is so hard for patients to do always, he would do telehealth for two appointments, one in person, and then another two telehealth appointments etc. Yay!!!!! Hallelujah!!!
Lol I was and still am so happy! And he wanted a telehealth appointment a week after the first appointment yo make sure my new meds were the best option.

For YEARS I have wanted a doctor who was there to help always and one who helped me with my meds rather than drop me in a black hole and leave all alone to figure out and guess by myself. To actually be a TEAM and work together to help me help my body so I would LIVE like I had begged all my doctor to help me to no avail! I could have a LIFE that I loved and do fun things and spend time with my family!!!! No more sleeping life away in pain and misery and hopelessness!!!!
It only took 17 years! Haha!

So now I am BACK and back to my happy self. I still have aches and pains full body and I have all my health issues and more besides but I am in a better place than I have ever been.

All of your support and love and encouragement to take time for ME was what I needed. I am so thankful for it and for all of your help over these many years.

Now if only it could get easier to post with no problems like before I would dare to call life quite perfect right now ;) 🙏

So consider this a reminder thar life is worth it! If things suck now, just remember that if one day they come up with something that can help you and your conditions, I PROMISE you will want to be around then to live your best life.

Hold onto hope! DON'T GIVE UP!! Please please don't. Through sheer will and the grace of God I am still here and gosh do I look back now and say it was worth the wait I wouldn't want to relive it lol but having a possibility to go to the movies again and do fun things out in the world with my family? It is priceless! Please hold on. Please. You and your best life are worth it! You are Not alone in this.

I am cheering you on and I am on your side. Your happy is out there! You CAN do this!!!!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Grief #Insomnia #Lupus #Lymphedema #Headache #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #plantarfasciitis #PanicAttack #PanicAttacks #Psychosis #PsoriaticArthritis #RareDisease #RheumatoidArthritis #AnkylosingSpondylitis #MentalHealth #MemoryLoss #MightyTogether #SuicidalThoughts #Scoliosis #Migraine

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Primary Lymphedema: It's not just about swollen limbs

My mother has primary hereditary lymphedema and so did my grandmother. My grandmother died of sepsis after having a hysterectomy at 38 years old. My mother is 74 and has struggled with the consequences of this condition all her life. When I was late teens my feet would swell a bit in the heat or after a night out dancing. When I was pregnant with first two children, my feet would swell but I was told that was normal in pregnancy. It wasn't until I was pregnant with my third child at 29 that my feet and legs started to swell hugely and they never went down. I was told it was due to blood pressure, which had risen in pregnancy and was put on diuretics and BP meds. Neither did anything for my swelling. That was 18 years ago. In the last 6 years my career has become deskbound and, as a consequence, my weight has increased by around 25kg (or 55 lbs). I can no longer fit any shoes. Any insect bite causes huge reaction that often requires IV antibiotics. I have had a few cases of cellulitis over the years. 9 years ago my right arm swelled massively and I had a subclavian blood clot (DVT in arm/shoulder) removed, first rib excision and a jugular turndown procedure to try and construct a new vein. I've never paid much attention to the diagnoses of my mother and grandmother but, two years ago I had a punch biopsy on my left breast. I was told the risk of infection was 1% and that it wouldn't be an issue. The following night I was in Emergency Department getting IV antibiotics for huge cellulitis reaction to infection. Three weeks later I was hospitalised with non puerperal (not breastfeeding or lactating) mastitis and ended up with sepsis, as three IV antibiotics would not stop it spreading. Finally one worked and I was released. A year later (May 2023) and I'm sitting at dining table and suddenly get a stabbing pain in left breast where had infection a year prior. By next morning I'm hospitalised again with non puerperal mastitis and am in hospital on IV antibiotics for over a week until it started to subside when they finally used the only antibiotic that has worked, flucloxacillin. This is when I started to research primary lymphedema and when I found how easily our body overreacts to minor infection etc, due to our sluggish lymphatic system. Then I found a sub type of hereditary lymphedema where a certain gene is responsible and often there is an extra eyelash condition present
I am now wondering if of a lot of my issues are actually due to this condition which I've never actually been diagnosed with. Hard here in New Zealand because our medical specialists are near to non existent. I have two daughters and a cousin (maternal side) with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Really interested in how these genetics are working. So keen to hear others' experiences.
#Lymphedema #primarylympedema #nonpuerperalmastitis #Ptosis #Sepsis #Cellulitis

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I’m new here!

Hi, my name is jonestra. I have Complex Regional pain syndrome, as well as 8 more chronic pain diseases. I hope to find others who have what I have . Fibromyalgia, Ankylosing Spondylitis, Psoriatic Arthritis, Trigeminal Neuralgia, Gastroparisis, Hypothyroidism, Cervical Dystonia, lymphedema, I hope to meet others with my diseases so I can learn more about each of them I have had Complex Regional pain syndrome for 23:years this June. I was healthy until getting this and now I live daily with something flaring.

#MightyTogether

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Years ago I came across this powerful phrase: Don't let the world make you bitter, be better ✨️

At that point in time I was bitter at how much I had lost. My teenage years were wasted in a hospital post surgeries and I was in a wheelchair and in so much pain, a LOT more than I had ever experienced. I was 15 and after school when my friends got to have fun, I had to go to physical therapy. I did love exercising so that wasn't what I was disenchanted with.
I saw these adults struggling and wincing in pain. They are weak! I thought in anger.

And then I saw this old lady who couldn't walk she hurt so bad she sobbed and they brought out a wheelchair for her since it was too painful. In that moment I saw myself. I had been there too. My mom had said "suck it up Tierra" "sometimes you just got to fake it til you make it"
Those phrases cost me so much. When she finally had bad pain, I told her the exact same thing, suddenly her attitude changed and she was much more charitable when it came to my pain. But that is a story for another day.

After watching that old lady hurt so bad, it hit me how awful I had been -even if it was only in my head. Later that day I came across that quote: Don't let the world make you bitter, be better!
I felt like it changed my DNA it was so perfectly timed! God helping change me for good ❤️

Don't let the world teach you to be cruel, because YOU are better than that. Dare to be optimistic and positive and spreading kindness around!

Have The Audacity To Hope 💕✨️✨️💖

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Insomnia #Lupus #Lymphedema #JuvenileRheumatoidArthritis #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #plantarfasciitis #PsoriaticArthritis #PanicAttack #PanicAttacks #Psychosis #MentalHealth #MemoryLoss #MightyTogether #Migraine #Grief #Headache #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #ShinSplints #sciatica #CheerMeOn #Upallnight #IfYouFeelHopeless #musclespasms

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This is something I still tell myself to help me get through the low and deep dark times in my life.

I don't have flares because my pain is CONSTANTLY level 10. It has been for many many years.
BUT no matter how small my good times are, they are worth waiting for.
The good and bad change. Different opportunities come. But we never know what life will bring! That is why we must fight on.

As a fellow Mighty advised me many years ago: If a cure comes tomorrow, won't you wish you had hung on one more day? 💕💕💕

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Insomnia #JuvenileRheumatoidArthritis #Lupus #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #plantarfasciitis #PanicAttack #PanicAttacks #MentalHealth #MemoryLoss #MightyTogether #Migraine #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #ShinSplints #Psychosis #PsoriaticArthritis #BoneSplints

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I'm new here!

Hi, my name is Valster69. I'm here because
I have MS, lower back pain that travels down the front of my right leg, Lymphedema in both of my legs and Neuropathy in both my hands and feet. I’m looking to connect with people who understand. I’m hoping to learn tips on dealing with everything I deal with and in turn help others.#MightyTogether #Anxiety #Depression #MultipleSclerosis

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