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Trusted Contributor
Posts: 1,506
Registered: ‎08-20-2014

@LilacTree, my RA is also severe. I am just recovering from my second foot surgery on the left foot, and soon will have my right foot done. This current surgery is my eighth joint surgery. I got a lot of joint damage before the biologics came out and it's continuing at a slower pace despite my current biologic.

 

I was on Enbrel not long after it came out and got excellent relief from it, but it wore off after seven years. There was a period where I was hospitalized five times in three months, twice I had to call an ambulance. Who knew a flare can be so bad as to get you admitted to the hospital for a week? I take Actemra now and it's been a life saver, but my hands, feet and shoulders are trashed. My sister has it also, and like you she cannot use the biologics because she gets terrible infections. She has the Sjogren's and other complication too.

 

I'm sure you know first-hand all about the fatigue, depression, osteopenia from Prednisone etc.. My autoimmune problems also started with hypothyroid which is now Hashimoto's. It sounds like we are on a very similar path - my other issues go on but who wants to dwell on that. I am sorry that you have this curse too. I read all the time of RA patients "curing themselves" with vegan diets, etc. I do all the holistic things, quit the wheat, dairy, take the turmeric and fish oil, etc., and it just takes the edge off.

 

A friend sent me a little blurb about the Japanese art of Kintsukuroi, where they take broken pottery and rejoin the pieces with gold. I wish you the best and hope that we will be rewarded in heaven.

Esteemed Contributor
Posts: 5,433
Registered: ‎08-28-2010

Vocal Cord Dysfunction (VCD) or Paradoxical Vocal Fold Movement (PVFM) occurs when the vocal cords (voice box) do not open correctly. This disorder is also referred to as paradoxical vocal fold movement. VCD is sometimes confused with asthma because some of the symptoms are similar.

 

What are the symptoms of vocal cord dysfunction?
People with VCD and EILO may experience the following symptoms:
  • Shortness of breath.
  • Chest and/or throat tightness.
  • Feeling they are "breathing through a straw"
  • Stridor/wheezing.
  • Difficulty with inhalation and/or exhalation.
  • Frequent throat clearing.
  • Intermittent hoarseness.
  • Chronic cough.

@PilatesLover- if you go to wwwdotaaaaidotorg/conditions-treatments/related-conditions/vocal-cord-dysfunction you will find a wealth of information.

Honored Contributor
Posts: 12,997
Registered: ‎03-25-2012

Re: Vocal Cord Dysfunction

[ Edited ]

@PilatesLover

OMG, you've been through a lot more than I have!  My disease has just hit my knees, feet and toes in the last year.  I have mostly fingers, hand, wrists and arm pain and disfigurement.  I have the typical RA hands/fingers that sway out.  I have not opted for surgery because of my age and the infection risk, so I have learned to deal with it the best I can.  There are so many things I can't do anymore.  The day I can't use my computer will be what I fear the most.  I broke my left shoulder in a fall and recouped only about 80% range, which the ortho doc told me would be about as much as I would ever recover.  I also have RA in both shoulders and the back of my neck.

 

Prednisone took my already osteoporic back to surgery on two vertebrae, ten in all have compression fractures.  My back is sometimes the worst source of pain, and I can't stand very long.  I use a walker when I go out, and sometimes a wheelchair when it's going to be a longer day away from home and my bed.

 

However, the symptoms I hate the most are chronic exhaustion and itching, both of which I deal with every day.  I am used to pain.  Dry eyes, dry mouth, sore scalp and hair loss, sore throat, many UTIs, the last infection being very scary, as it was pseudomonas aeruginosa, third down the scale from MRSA in resistance to antibiotics.  I had to undergo seven straight days of IV infusions of cimefepime and thankfully, it cured it.

 

I also am totally messed up in my gastrointestinal system and have tried so many diets I can't even recall half of them, Fodmap, SIBO, you name it.  I stay away from all meat products and dairy, but I don't find a difference in my symptoms which are upper and lower abdominal bloating, and that is chronic also, as is the throat and choking.  So I have to force myself to eat small amounts very carefully.  My weight is under what it was when I was 14 or so, and the gastro doc doesn't like that, not at my age, which is 80.

 

I'm sure you totally understand the frustration of living with chronic disease, and your dear sister also.  My sister had RA and I think my mother had it, but she died of lung cancer at 49.  My beloved sister died seven years ago this August from metastatic colon/lung cancer at the age of 72.  Her RA was mild, just some nodules on her fingers.  Both of them were long time smokers (30 years for my mom, and 60 years for my sister, and my sister self-medicated with beer, thus the cancer).

 

I've never heard of the med you are taking, Actemra, I will look it up.  I don't take pain meds, occasionally an Aleve, and last night I took an aspirin because my left arm felt funny. 

 

As you surely know, it's one thing after another and we can't plan anything in advance because we never know how we will feel from one day to the next.  I have graduations and weddings coming up and have no idea if I will be able to go or not.

 

Autoimmune disease is a life changer, that is for sure.  And other than dangerous meds, docs really don't know what to do for it.  Oh yes, we are pretty much on the same path.  My thoughts and empathy are with you and your sister.  Hang in there.  I will be interested in what your RA doc says about your recent throat/breathing issues.  One thing I know is it is not stress . . . although our lives are certainly not without it.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
Esteemed Contributor
Posts: 7,149
Registered: ‎11-15-2011

@LilacTree@PilatesLover  I am so sorry you have RA.  It is not nice.  I didn't know it would affect your throat.  Prayers for you both.

 

I lost my voice with vocal cord dysfunction and went to a speech therapist.  Mine did clear up after a few sessions. 

 

Mine was from acid reflux.  Imagine my surprise when I went to an ENT and came home with a script for omeprazole!

 

Good to hear from you Lilac Tree.

 

 

Honored Contributor
Posts: 12,997
Registered: ‎03-25-2012

@Zhillswrote:

@LilacTree@PilatesLover  I am so sorry you have RA.  It is not nice.  I didn't know it would affect your throat.  Prayers for you both.

 

I lost my voice with vocal cord dysfunction and went to a speech therapist.  Mine did clear up after a few sessions. 

 

Mine was from acid reflux.  Imagine my surprise when I went to an ENT and came home with a script for omeprazole!

 

Good to hear from you Lilac Tree.

 

 


@Zhills

Nice to hear from you too, Zhills!!  Thank you for your prayers.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
Honored Contributor
Posts: 16,837
Registered: ‎03-10-2010

People are so often criticized here about asking for experiences with symptoms/problems we are having physically.  I know I was recently when I asked about something, although I said I had an appt. with a doctor.  It certainly proved helpful for the OP to ask when Lilac Tree gave her so much information.  She would have had no idea otherwise.  I find posting here very helpful.


The Bluebird Carries The Sky On His Back"
-Henry David Thoreau





Honored Contributor
Posts: 12,997
Registered: ‎03-25-2012

@NickNackwrote:

People are so often criticized here about asking for experiences with symptoms/problems we are having physically.  I know I was recently when I asked about something, although I said I had an appt. with a doctor.  It certainly proved helpful for the OP to ask when Lilac Tree gave her so much information.  She would have had no idea otherwise.  I find posting here very helpful.


@NickNack

I agree 100% NickNack.  I have been helped many, many times just by asking for posters' experiences.  Very few OPs are asking for a diagnosis, just what folks may have knowledge about and, often, are experiencing.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
Esteemed Contributor
Posts: 7,702
Registered: ‎05-08-2010

@LilacTree and @NickNack  I have to ignore the negative posts discouraging posters to ask about others experiences.  People that have been through these things often bring a level of understanding that a nurse or doctor that hasn't could ever offer a patient.  We found this when my DH was going through cancer for 10 years and then ultimately had a bone marrow transplant.  While sitting along side other patients receiving treatments, a lot of info gets shared.  A lot of helping hints are garnered.  Forums were invaluable. The nurses are privvy to much of this and were often a wealth of information, much more than the doctors.  The doctors mostly offered the info that was written on the package of the drug they were going to order and the protocol that was set up by the drug company. 

 

So I hope people will keep asking for this valuable incite.  It is probably one of the few things we can still share on this forum, and maybe the most beneficial.  Ignore the negative posters. 

Fear not Brothers and Sisters! I have read THE BOOK..........we win!!!
Esteemed Contributor
Posts: 5,258
Registered: ‎03-10-2010

@PilatesLover

 

I know you're going to pursue RA as a possible cause, but would also greatly encourage you to seek a consult with an ENT who can scope your throat, asking you at the same time to utter certain sounds, which allow him/her to visualize the interior of the larynx.  This simply cannot be left uncheck, as a to-do item on your list.

 

There are many reasons why vocal folds or the larynx as a whole experience issues, the most difficult to diagnose being nerve involvement.  Please do seek out the expertise of an good ENT.