Posted , 5 users are following.
Anyone else have Lofgren syndrome on top of Sarcoidosis?? I don't really understand what this is but all I know is past few days I can't walk on my left foot feels like I have Charlie horse in the middle bottom foot help lol
0 likes, 16 replies
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debie1966 Katlis
Posted
Oh no, I had the exact same feeling and it was awful, I couldn't walk at all without awful pain. I went to be checked a few times and they finally did an MRI and found I had a torn plantar fascia and the tear was right in the bed of the heal. I had to wale are 6 casts and have surgery, then fractured it in physical therapy and went into a boot ... 16 months of boots and casts and I started PT again. It's still not right but lots better.
Just sharing what happened to me. I did NOTHING to hurt my foot but normal walking. They said it prob wasn't from the sarc but that the prednisone could sure cause it.
Deb
zss Katlis
Posted
I'm a little confused here. I have Sarcoidosis and have had two Dupytren's Contractures removed from my right hand. I also have hard lumps on the soles fo both feet. The right foot it is between the front pads and at the base of my middle toes on the left. They have a burning pain when I walk on them. These are the foot equivalent of Dupytren's Contracture and they are referred to as Ledderhose's Disease or Plantar Fascial Fibromatosis. Both are apparently caused by Sarcoidosis. Along with the Uveitis I have in my eyes, nothing surprises me about the damned Sarcoid any more.
debie1966 zss
Posted
I agree in that nothing surprises me with sarcoidosis any more. I've been battling it since 1998 or 1999 and it has played havoc with my body. I've had more tendon tears and muscle tears show up ok MRIs and I'm pretty confident there are more but I don't want to know until I can't take the pain any longer because I don't want any more surgeries. I have many bone spurs in my feet and continually have plantar fasciitis. Sarc is in my bones and bone marrow along with several other places.
I wish you the best of luck,
Deb
Sure sounds like you have a lot going on.
zss debie1966
Posted
Hello Debie, I have been diagnosed with Pulmonary Sarcoid since 2008, but owing to all the other problems I've had since about the age of 19, I suspect I've had Sarcoid much longer. Years of unexplained migraines, chronic tiredness, drifting concentration, etc, etc. I studied and worked as well as I could in spite of how I felt. Not long after I was diagnosed, early 2009, I found myself in oncology with my white blood cell count through the stratosphere, waiting to be tested for Leukemia. Then I mysteriously went back to normal. Sarcoidosis was suspected to be behind that "incident".
Just to complicate things, I also have Asthma and this with the Sarcoid makes breathing laborious and painful, all day, every day.
Thank you Debie and the best possible health to you.
Katlis zss
Posted
I was told along with the Sarcoidosis diease I have lofgren syndrome and it can flare up anytime but idk much about it but I've been up since 2am with severe pain in my foot I can't stand it!!
jean68563 Katlis
Posted
i was also diagnosed with lofgrens syndrome also erythema nodosum
i have recently had a flare up of lofgrens whic has affected my legs. After a visit to my Dr I came home with cream to help the inflammation and pain killers.
this is not very nice as my feet and legs are bright red and it will takes weeks to go. The pain stays until the redness disappears. You should go to your Dr for some help
Katlis jean68563
Posted
Thanks Jean I will I can't hardly walk I'm wide awake since 2am with pain in that foot as well I'm on toradol for pain but not even close to helping this kind if pain
jean68563 Katlis
Posted
The pain is the worst it was in my back as well. I could not raise my legs to get into bed my husband was helping me to robed and get up. You have my sympathy there is nothing worse than pain during the night. I hope you start to feel better soon 😌😌
Katlis jean68563
Posted
Oh wow that's horrible this is the worst I've been but hope ur doing well I know exactly where you are coming from thanks!!
zss Katlis
Posted
Katlis, Jean, what the hell is going on in our bodies?
Does anyone on here get sharp sudden burning pains in your feet, hands and eyeballs?
That's what happens to me regularly and it's so painful it jars your body in reaction to it.
Katlis zss
Posted
I wish I could answer that lol I feel the same yes some days my feet feel like I'm walking on broken glass just horrible I get no help from my Dr. He says have ro wait this out and in 2 yrs I should be back to myself wtf does that mean and no medication will help me!!
zss Katlis
Posted
Since upping the dosage of Symbicort last week, my voice is shredded and I have an ulcerated mouth.
$%@& this.
sharon83239 zss
Posted
Hi I'm also taking the symbicort inhaler I've been on it for over a month, I get a husky voice with it sometimes, what dosage are you on ?
zss Katlis
Posted
Katlis, Sharon,
It took me two years on heavy Prednisolone use and the tapering off from it, then all of last year to recover from the Prednisolone due to the fact it causes the body to stop production of the hormone Cortisol. That is essentially Addison's Disease.
I have not made a full recovery and never will.
The Sarcoidosis had done the damage to my lungs and made the Asthma harder to treat, requiring more use of Prednisolone. The Uveitis is unpredictable too. It has flared up twice since January needing Prednefrin eyedrops.
I am left with chronic tiredness and fatigue, pain along the full length of my breastbone, my chronic arthritis is worse and due to extended use of Prednisolone and Prednefrin, progressive blindness and brittle bones. I have developed a hypersensitivity to Prednisolone and now, even in eye drop form I feel all of the side effects.
Sarcoidosis has cause a drastic reduction in appetite. I can only eat one proper meal a day and the rest of the time I snack, just enough to stop tummy rumbling.
Sharon, I've gone from one drag of Symbicort 400 twice a day to two drags of it twice a day. So from 800ug to 1600ug.
I'm going to switch from the turbo inhaler to the aerosol version of Symbicort, dragging on the turbo inhaler hurts my chest.
It is a type of Cortisone and like the Prednisolone, both are responsible for calcium loss in bones. You have to wash your mouth out to save your teeth from damage.
sharon83239 zss
Posted
Hi sorry to hear you've had it bad, I've only been in the steroids for over a month same as the inhaler, when I use my inhaler I always have a drink of water with it? but I to when I suck on my inhaler in it hurts my chest, I'm due to see my doctor the 11th of April I will mention it an see what he says, the fatigue is the hardest to deal with my job is so active I'm struggle most days as I have more bad days than good.
Katlis sharon83239
Posted