Health anxiety?
Posted , 5 users are following.
is it just me or does anyone else started suffering from health anxiety since being diagnosed and having LS? 🤔😢
1 like, 15 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
×
Notes on Health anxiety?
V3301
Posted
Hey all. This is little off track but as anyone got any cherry angioma(on chest and tummy) since diagnosed with LS..? Should I be worried n go doc or am I overly worrying
mary97417 V3301
Posted
YES to both! I'm so much more anxious since diagnosis and i have been developing what i guess are cherry angioma on my trunk. i never thought to connect the two, but when i read your comment i realized both My LS and the angiomas started around the same time. Perhaps another clue that this is autoimmune related?
V3301 mary97417
Posted
aww .. have u got many cherry angiomas? should i be worried aboutt them? did u go doc to check them out
vickie00010 V3301
Posted
Hi, I've Vickie - I am 68 years old and was diagnosed 3 years ago...I see a doctor in Philadelphia who is a "Vagina Specialist" at Drexel University...he has been written up on LS all over the world...he is brilliant and a gem of a doctor...I was lucky to find him...he does the Mona Lisa laser but was totally satisfied with the steroid he prescribed (something with a Col......) my "condition has improved 85 percent...I happen to TRY and use all natural things before using medication...but sometimes u just have to use what works...I have a friend whose Aunt is 92 and she was diagnosed at 75 and has been great since starting the steroid...I use twice a week...I am happy that drug companies (although I usually hate drug companies) have the means to cure OR help people improve their quality of life...I wish u the very best...Vickie
Nancy_K_B vickie00010
Posted
HI Vickie - thanks for sharing. HOw interesting. Can you please share the name of your doctor who has been written about, and or has written a book we an read etc?
Even more interesting ot me, I'm almost 74 and was diagnosed about 2 years ago is about your friends Aunt. If possible could you find out from her whether staying on steroids al those yeas has been able to keep her "architecture" from changing? I don't think we've had anyone in their 90's write in here and it would be really helpful hopeful to know what she's done besides the steroid to make her be so well. smiles and Thanks!
vickie00010 Nancy_K_B
Posted
sure - with great pleasure - his name is Dr. Paul Nyirjesy and he is at Drexel University Hospital... (in Philadelphia)...he is amazing...he actually can just look and diagnose with his eyes....(he has been doing this 30 plus years) but of course does all necessary tests...best of luck to u...
vickie00010
Posted
and yes, my friends Aunt is still on the steroid...she uses very little as I do...sure there r many different cases of LS and it depends how fast it is treated and what medication is used...I do NOT like using a steroid BUT do not like how I feel without it...Dr. N. has told me that I will be on medication for the rest of my life and that was ok...u have to speak with him, listen to your body and weight out the pro's and con's for yourself...good luck...by the way I see my regular GYN every year and he never picked this up...was not until I saw Dr. N. that he educated and diagnosed me...it was life changing....I do not think many doctors even know about THIS or r trained to diagnose it....
Nancy_K_B vickie00010
Posted
Ah, yes, Vickie... your guess is right.. when you have time to read back about 2 or so years of comments - it's become obvious that most OBgyn's have no idea about lichen sclerosus. ha! funnily I got more help from my cardiologist turned integrative medicine doc than from the Ob he sent me to for official diagnosis. I actually had self diagnosed myself from the internet before i saw them for this issue.
I spent weeks - or really months reading everything I could find out about nutritional deficiencies and autoimmune diseases. I think I impressed my Doc. BUT HE is the one who got me down the vitamin D and magnesium worldwide deficiency road to begin my search. The obgyn didn't want to hear any of it!
I do wonder if it was because as a cardiologist he has been acutely aware of the nutritional elements? smiles - never thought of that until just now.
laurie73352 V3301
Posted
Hi, I think a lot of people that have this disease have had anxiety at some point, I know I have. Its not an easy illness to deal with especially when we have bad flare ups. The hardest thing I fine is how it has impacted my life with my husband and how we have had to adapt to my illness. He is so understanding but I know its hard on him as well. Just know you are not alone in how you are feeling.
Laurie
Nancy_K_B V3301
Posted
Dear V - smiles... well YES! and the way that I counteracted that was to go full steam into total research on how to solve for autoimmune disease. I used nutritional deficiency as a kind of baseline only because that is what I am capable of searching as a non-medical person.
Honey, I don't know anything about the cherry something or others... but I just now went and looked it up the same way I did all my nutritional research for LS. adding the phrase "nutritional deficiency" to the symptom. Here is one comment from a medical site:
"This suggests hormones may be a major factor in cherry angioma formation. While we don't know for sure what causes cherry angiomas, they have been associated with excess estrogen and copper, bromide toxicity, and a vitamin C deficiency leading to weakened blood vessel walls." Apr 3, 2018
Gosh, V, how did you get too much copper in you? You may know that copper and zinc have a ratio that must be kept fairly on target. And it just so happens that ZINC is one of the critical needs and co-factor with Vitamin D that I found when looking all this LS nutrition up. (OH? do you have a copper IUD by any chance?)
SO, to help you out of anxiety territory, you might like to read the two articles that I worked up last year for all of us to understand the issues involved and to 'take back our power' smiles.
Quick Start:
https://patient.info/forums/discuss/the-vitamin-d-cascade-or-flow-of-the-cofactors-required-to-rebalance-our-bodies--707526
Full Version:
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
vickie00010 V3301
Posted
WE r WOMEN....anxiety - stress - issues...we ALL have that...don't we...? there r SOOOO many autoimmune issues today...I have 2 daughters in their 40's and BOTH have something...the reason there is NOT more research done on LS is because there r not enough women with it - so therefore, not enough MONEY to bother researching it and find a way to cure......America is all about drugs but if there is no money going in their pockets....they do not care...just like AID'S 25-30 years ago - no one cared at the beginning...only when it affects a white males "penis" do the drug companies sit up and want to find a CURE....that's a FACT, girlfriend!!!!!!
V3301 vickie00010
Posted
so sad n frustrating to the point it gets me in tears .. why do we have to be thr unlucky ones to get it.. infact why do it even have to exesist ...
vickie00010 V3301
Posted
listen...I can certainly understand that THIS is something no one should HAVE...but we do..there r "drugs" (oh how I hate that word) that do help and can actually keep this under control...the real secret is to find a doctor (and there r few of them that have been trained in this)...and education yourself and listen to what they suggest...I am NOT someone to take anyone's word on something (probably because I am 68 and have seen TOO much over the last 50 years) and research and then research someone...as I said before we r "lucky" that there r medications to control (in most cases) and instead of having anxiety over this - take the bull by the horns and take charge of this - IF one thing does not help try something else...anything autoimmune usually begins with a "breakdown" of our bodies...eat well, exercise, get sleep. don't drink or smoke and keep "your machine" in tip top condition and IF along the rocky road of life something does happen get the best medical advice u can...and once u do get it (the medical advice) research and then research some more so when u begin the treatment your mind, body and spirit are all connected....
mary97417 vickie00010
Posted
Thank you for this...i needed a little tough love today. I KNOW in my heart that there is more i can do to help myself, mainly taking control of my diet. But ive just been allowing myself to wallow in my own pity instead of bucking up and doing the work. LS sucks for many reasons, but i think part of why its so hard is that its not really something you want to go talking about with everyone and we are mainly suffering on our own. I just foundthis forum today and already i feel my anxiety lessening by reading others stories/experiences.
vickie00010 V3301
Posted
SO glad I might have bought your heart a little sunshine...people today just do not realize that our food chain is poisoned....they think more about filling up their cars with "high test" than what they put in their most precious bodies...all the strays and chemicals they consume DO take a toll on ones body...in the 1950's and even the 1960's our food chain was much healthy...so get back on that horse and ride again (haha)....best of luck to u and never stop educating yourself....AND believing in your body...its an amazing instrument....