Please help going insane

[Helpme315]

Hey everyone this nightmare started 10 years ago
At the age of 19
I took accutane twice and had to stop midway due to liver enzymes high
Cholesterol and triglycerides
Since then I?ve been plagued with issues

I feel I have sjorgens but I can?t get diagnosed

I wake up every 2 hours can?t sleep solid
I woke up 3x in 7 hours today alone...
I wake up with dry eyes crusted mucus stuck shut or just feeling like I slept with contacts and stared at a fan all night
Dry nose with green crust
Dry mouth (as soon as I get up though mouth has excess saliva)
My eyes swollen dark
And skin is flaky and pink and flushed easy
Cold hands and feet
And I urinate sooooo much
Heart pounds just peeing or walking up stairs
Dry scalp too

Now I?ve had Schimers test show no tears
Ana speckled twice now negative before
Negative ssa ssb
Negative lip biopsy first time
Second negative but low grade inflammation may have to do another biopsy

I?ve tried restasis xxidra
Plugs
Now blood drops nothing helps
I apply coconut oil inside eyes and nose

My mouth is usually dry if I wake up anxious or stressed when trying to sleep or on a lot of meds

I have severe depression anxiety ocd and bdd and urticaria hives
And can?t treat any of this because of the dryness

I feel like I?m
Going insane

Every doc says thyroid and then says nope normal yet I had thyroiditis one time
Everything in me is inflamed
I now have fat in stools and Ct scan was normal
Then they say diabetes insipidous but never looked for it
They mention adrenal tumor
Addison?s
Carcinoid
Pheocromoctyoma
Never checked for these but throw it at me

I have inflmed eyes
Nose
Skin
Lip
Stomach
Esophagus

I?ve had inflamed
Thyroid and liver was fatty

I drink water and almond milk or coconut milk
I avoid dairy gluten wheat
I eat eggs
Salmon
Chicken beef all grass fed
Yogurts and milks dairy free
Rice quinoa beans and pasta gluten free
Veggies and fruits
Nuts and seeds
No bread either

I take a multi whole food one
2500 vitamin d
Probitoic

Just strted seabuckthorn oil
And they want me on digestive enzyme iron and zinc
I may also start msm hylaueonic acid and collagen

Nothing helps me I?m so paranoid now it?s food
Water too much of it or not enough
If I urinate too much drying me
If accutane just gave me mystery
If sjorgens

Doesn?t make sense no docs will
Help me or rule out

I?ve stopped alllll my psych meds to see if it was that
I started gabapentin again to see if that helps

I?m so sick of looking exhausted
Never sleeping
Extremely dry
Hot and cold
And no answers and can?t treat anything
I wanted bag surgery and they said nope dry eye
Wanted lasers on my skin nope could be lupus maybe
Meds can?t take

Sorry for all of this I just don?t know what else to do
My paroid glands swell when I would eat pizza also

So idk what to do...I?m almosf 30 I?m a male and since 19 I have not enjoyed life I?m
Housebound due to all of this
And I see no end in sight and it?s becoming so depressing
To think I?ll always be dry and sleep deprived and look and feel like shir olde ro Get and no docs will help diagnose or treat and I can?t takd meds for any of my issues
...they also mentioned sleep apnea before too I?m 137 pounds 5 foot 9 so idk...
Sorry for all of this

Are there any tests I can get besides cutting my lip open 3x

What causes low grade inflammation in lip? More importantly my whole body?

And do u think this is sjorgens???

[lorigacc]

So many of us here understand just how overwhelming this all can be.  I have felt this, it does seems like it never ends.  I have been battling autoimmune issues for the last 20-30 years, long before I knew what I was battling.  Most of us, also see a variety of doctors being this disease affects us all differently and affects many different body parts.  Have you seen a rheumatologist? An opthamologist?  For me, it's best I don't think of my problems as a whole, but take care of each one separately, so I am not overwhelmed.  We do understand how you are feeling and most of us have felt what you are feeling.  There are some great folks on this board, please feel free to ask questions, and read past posts.  Take a breath...be kind to yourself...and know that this can get better.

[Helpme315]

Thank you...sorry everyone of u suffer as well
It?s a nightmare
And I hope u and everyone have some relief

I?ve seen so many docs
Gastro
Ent
Endo
Rheum
Derm
Primary
Psych

Rheum I saw before said Ana is low speckled no big deal and I have no autoimmune issue and see a psych
Or if I want to try plaquenil I can

Another one said hmm sounds like diabetes see an endo
My endo says it?s immune

[Joe S.]

1. Don't Panic- Panic/anxiety will make everything worse. Do your best not to be anxious or depressed. I suggest the cognitive behavior therapy found in the book "Feeling Good" by David Burns. I also recommend that you read "Spoon Theory", it can be found on the web.

2. Breath - when you are in pain, remember to breath through it. When women go through child birth most are taught how to breath to reduce their pain. I combine breathing of another type with...

3. Meditation- I have a simple meditation that has helped many people including my self. It works best if you can practice it when you do not have pain. If you have to practice when you are in pain it may take a bit longer to work. Get in a relaxed position, with your eyes closed, look to the top of your head. As you breath in think "I am" and as you breath out think "Calm". Try to do this for 15 minutes. if you mind wanders, start over. If you fall asleep that is okay. In fact I use it to get to sleep several times per night. An hour of meditation is like several hours of sleep.

I find that when I am in a flare, like you seem to be, taking an antihistimine will help me manage the flare.

[irish]

My heart goes out to you with all that you are enduring. I have no words of wisdom except to not give up. I am a nurse and took my training in a big medical center years ago. I worked on the dermatology unit a lot of the time and I saw patients who came from all over with very weird conditions.....most of which were autoimmune in nature but in the 60's it was virtually impossible for diagnosis.


If it was me I would make a list of the specialists or immunology departments at hospitals, universities, etc that you would consider going to. I think it would be worthwhile to get a whole new assessment and see if they can figure it out or at least treat your symptoms and make you more comfortable. There are times when we can go years without diagnosis(I went about 35+ years)but at least some doctors will assume responsibility for finding comfort measures for us.


Doctors can have all kinds of ideas but if they don't know where to even start it means that they are not going to do us any good. You need a specialist or two who have some experience in rare diseases and also have the ability to make decisions on where to start and what to zone in on.

Pick out the doctor you have who you think will be the most helpful and see if you can get a referral from him to some specialists. Also, if the finances are a problem deal with your social services in your community and at the places where you want to go. Make waves and ask for help. Be aggressive and do not be apologetic. You have suffered long enough and need some help. Also, sometimes the immunology departments or other departments at training hospital have programs needing patients with rare diseases and you may be able to qualify. Just keep calling and asking people things.

Call clinics and hospitals and ask for social services if you have to to find out information regarding financial issues and any other questions. Social services departments generally have a fair amount of information about a lot of medical departments and issues.

You have so many things going on that are not normal and are starting to have some blood work that is starting to turn positive that this may be the time you will find help. The thing that I would so is to get your medical papers together with blood work, scans, x-rays, any biopsies, emergenciy room visits (usually done when we are so ill and at the end of our rope and ER can add some interesting comments at times), and medical records from eye doctors. This is so hard to do. Usually you have to make a list of what you need and from whom and get the phone numbers ready. Call the medical records departments at the hospitals and clinics and call and explain what you need. It helps to have some dates lined up.

Lining up dates is hard, but if you try to get the times when you had signigicant issues or changes these visits are helpful. The visits that are totally uneventful are not always helpful as they are so much repetition. You will have to decided. Sometimes you just have to have them copy the whole works and fax them. You will probably have to pay for a certain amount of these if there are a lot.


The records of the family physician can be helpful also. I also want to tell you to not place stress on yourself during this search. ADjust your schedule so you can rest and ask friends and relatives for help when you need it. If you have a church or other friends in organizations that can help please ask them. If you need help from public health with your cares or cooking, etc. check with them cause you may qualify for things that will make your life easier.

I know I can't solve your problems or make yor better, but hopefully there are a few ideas that may help. Let us know how you are doing. Irish

[Carolina]

Dear  Helpme,

So much good advice already.

Here's the good news: the right medical team can make all the difference.  I always suggest getting involved with the nearest University Medical Center.  At a medical Center there are doctors who do research and who are interested in unusual cases.  I get my care a Duke University Medical Center.

Here's the not so great news:  Medical science doesn't know everything.  There is much unknown territory, and often we live in the unknown territory waiting for medical science to find us!

I post on this Forum because I found it when I was desperate.  And I got amazing help that saved my sanity (what there is of it).

I do have an Immune Disorder in which my own Immune System attacks my organs and systems.  I have many kinds of damage, including the damage like the damage that those with Sjogren's experience.

Sjogren's is an autoimmune disorder, and is caused by an attack on the moisture producing system in our body.  The Immune system uses autoantibodies to carry out the attack.  That's why Sjogren's is an autoimmune disorder.  Auto means self....so the immune system is attacking the body itself.  And like with most immune disorder, many more types of damage to the body are possible, not just dryness from a damaged moisture producing system.

For years and years I was tested for every autoimmune condition, for every genetic disorder, and for every imaginable defined disorder.  I have none of those.

In my case, my Duke Immunologist believes that my Immune Disorder is using cytokines to attack my body.  Cytokines are another biochemical in the Immune System.  Cytokines are supposed to fight infection.  In my case they attack my body.

I was over 70 before I had a diagnosis for what was happening to me.

I still treat only the symptoms that result from my immune disorder.  There is no treatment for an attack by cytokines.  When the attack is by autoantibodies, there are medications to decrease the attacks, although they are not perfect.

Here we learn, step by step, to follow Joe S. instructions above.  Relax, Breathe, Let Go.
And we learn, step by step, how to relieve the discomfort we are experiencing.

Some relief is obtained by prescription medication, some by OTC drugs and supplements, some by using a humidifier, meditation, exercise.  I use everything, and I have found great relief, even tho' I am now disabled due to extensive nerve damage in my body.

Welcome, Helpme315, we are here for you.

Regards, Elaine

[Helpme315]

Thank u all so much for trying to help
I will need to apply all this

Been very hard dealing with this
Now I?m developing food disorder and paranoia because I have no idea what?s wrong with me
And being told notning makes u wonder if it?s somethig I?m doing at home
Or something I?m eating

Example
Vitamin a I keep hearing it?s toxic after accutane and during that course it was

And now I started seabuckthorn oil and multi that have a
Beta form but still afraid of toxic levels
The drybess skin eyes nose scalp and mouth waking up and during day insomnia can all be from toxic a levels
Yet blood is fine but they didn?t check when I took them supplemwnts
And I notice no difference in dryness and hearing how seabuckthorn oil works
Wonders

Just a nightmare I?m almost 30 and can?t picture feeing worse as I get older
....wish u all the best and hope u all enjoy your weekend

[trejonina]

Hi, besides ANA test,what other (blood)  tests have you had done??? SSA, SSB, Anti-dsDNA, RF, ESR, for Sjongrens. And try to have lupus tests too: APLs, Anti-Sm, CRP ,COMPLEMENT LEVELS, ESR, CBC, chemistry panel.

[trejonina]

  PS  Also if you have symptoms of thyroid malfunction ,even if your test show normal, the Endos. will treat the symptoms, and treat you with levothyroxene ,for example, or whatever med. they prescribe . Test yourself for Hashimoto's also, or thyroid nodules. Good luck!

[irish]

Get another opinion.I speak from experience believe me. I would quit worrying about the Accutane and everything else cause the more you worry the worse you are going to feel. Stress makes any health issues worse. I am 75 and have learned over the years that 98% of the stuff I worried about never came to fruition. Also, it is good to get a diagnosis, but it is much better to get relief for the rotten symptoms first and worry about diagnosis later.

I would also go to psychiatrist and be assessed for depression. Most people with chronic illness suffer from depression and autoimmune diseases precipitate depression a lot of the time. An antidepressant can help your appetite, ease your anxiety, help with pain control, help with sleeping issues and just make life more tolerable. Remember, depression doesn't mean you are crazy. Whatever that is. Just getting a better nights sleep can improve our ability to cope so much better.

Depression is an imbalance of chemicals in our brain. Stress and dealing with chronic illness can really screw those chemicals up and just replacing them can make our lives better.When you are prescribed an antidepressant ask the doc to start you on a low dose and increase after 2 weeks or so. This is so much easier on your body and any side effect are less bothersome. The addition of antidepressants can make a huge difference in ones quality of life. Good luck. Irish

[Helpme315]

Hi, besides ANA test,what other (blood)  tests have you had done??? SSA, SSB, Anti-dsDNA, RF, ESR, for Sjongrens. And try to have lupus tests too: APLs, Anti-Sm, CRP ,COMPLEMENT LEVELS, ESR, CBC, chemistry panel.

I had ssa ssb negative checked 1x
Anti dsdna negative
Think rf and other one were looked at too

Some of the lupus ones weren?t

[Helpme315]

  PS  Also if you have symptoms of thyroid malfunction ,even if your test show normal, the Endos. will treat the symptoms, and treat you with levothyroxene ,for example, or whatever med. they prescribe . Test yourself for Hashimoto's also, or thyroid nodules. Good luck!

I was told
Thyroiditis years ago and given levothyroxine
But she made me tooooo hyper lost 30 pounds and more issues and then she took me off med said I was cured lol

[Helpme315]

Get another opinion.I speak from experience believe me. I would quit worrying about the Accutane and everything else cause the more you worry the worse you are going to feel. Stress makes any health issues worse. I am 75 and have learned over the years that 98% of the stuff I worried about never came to fruition. Also, it is good to get a diagnosis, but it is much better to get relief for the rotten symptoms first and worry about diagnosis later.

I would also go to psychiatrist and be assessed for depression. Most people with chronic illness suffer from depression and autoimmune diseases precipitate depression a lot of the time. An antidepressant can help your appetite, ease your anxiety, help with pain control, help with sleeping issues and just make life more tolerable. Remember, depression doesn't mean you are crazy. Whatever that is. Just getting a better nights sleep can improve our ability to cope so much better.

Depression is an imbalance of chemicals in our brain. Stress and dealing with chronic illness can really screw those chemicals up and just replacing them can make our lives better.When you are prescribed an antidepressant ask the doc to start you on a low dose and increase after 2 weeks or so. This is so much easier on your body and any side effect are less bothersome. The addition of antidepressants can make a huge difference in ones quality of life. Good luck. Irish

Thank u...I?m trying to accept I took the drug just hard to wonder if I?m mamihg issues worse by eating foods and supplements with a in it...hard to explain
I?ve tried every psych med for my issues
Ssri I can?t take and some if not all made me maybe sleep extra hour but that?s about it
Dry eye gets worse from these meds...and mouth
So hard to find relief
These docs just don?t care I guess

I?m atil seeking answers and treatments

Looking into Lipiflow and ipl for eye

[trejonina]

Hello Helpme, maybe you should try and take the AVISE test,as it is supposed to be more sensitive than ANA etc. Might help with your diagnosis. Read the post by Warmwaters today.

[irish]

I googled the AVISE test and there is a fair amount of info on it. Sounds like it is pretty good at helping nail down a diagnosis. Worth checking into. Good luck. Irish