Fibro patient w/ severe autoimmune disease symptoms

Hi Eden, yes dear lady I relate to everything you're suffering with, but it has taken awhile to type a reply up.

I just happened upon this site and your post was the first I read and I joined just to reply to your post... believe me, I can relate to what your going through.

Excuse me if what I've typed is hit and miss but there are days I can't stare at the computer screen too long.

I wouldn't use tap water in your eyes. Use eye drops in vials only (suggestion Satain Ultra or a gel at night). Don't use get the red out type.

For your nasal passages and sinuses buy some Ponaras nasal emolument at Walmart $12.00 it's over the counter. Also buy a nasal pump mist (like the 12 hr kind) and one squeeze bottle, pour out the pump mist bottle, rinse it with warm water that has been boiled and then fill it (the pump) 1/2 full of the saline and then add the Ponaras to your own liking... it's used in the Space Shuttle - I'm sure you'll love it! Use it undeluited at night. For years I use just a touch of Sterile Vaseline in side my nostrils.

For me the best thing I've found to help dry mouth / throat while sleeping (I would have to sip on water every 20-30 minutes) is Trident chewing gum (spearmint). I take off about 1/4 of a stick and slightyly chew it and then slip it between my cheek and gums, and I can actually sleep about 6 hours without water... so cool

about my eyes, it began with dry then really dry...
I was told that legal blindness is 20/200 - for 16 months mine was 20/2500 with pain beyond belief they were on fire. I would not have been able to stand it - if it were not for God's grace). I had to wear 3 pair of sunglasses in the house with the blinds down, drape drawn and blankets over the windows... not to mention the unbearable pain - 50,000 nerve endings in each eye.

I had seen at east a dozen Eye Doctors which gave me no answers as to what was going on.

The pain hovered between 8-10 all the time (I had no idea a persons eyes could get so painful), I could not go outside because the sunlight was unbearable.

On the trip to Vanderbilt (of course my wife drove) I had to wear a sleeping mask with sun shades covering the windows.

As time went by my eyes began to get more and more light sensitive, especially when I looked at the computer screen (28 font w/ color inversion on) and my eyes would become very glassy / blurry and hurt. Naturally I prayed and was prayed for, but things were only getting worse. I began going back and forth (weekly) explaining what was happening to my eyes with several eye Doctors I was seeing and they would prescribe drop after drop for pain and dry eyes due to Sjogren's Syndrome, still they only worsened. All the drops, ointments caused / induced glaucoma, but that was almost a blessing because the Glaucoma Specialist discovered that I was allergic to two of the main preservatives used in all the eye meds I had been prescribed, so after this I had to have everything made by a compound pharmacy.

My daughter called and said, dad I made you an appointment to see Dr. so and so... I said, okay (even though he wasn't a specialist per say, something just felt right about this).

I kept the appointment and during his examination of my right eye... with my left eye I could read his lips... WOW! And like all the rest he to put me on eye drops for pain and inflammation and wanted me to return in one week... well I only made it two days and had to go back because the pain was a constant 8 spiking to 10 & that was 24/7... I was getting very close to being put in the Hospital for pain relief.

Although you may not have what I had, but just to catch whatever is going on - I would defiantly suggest to see an eye specialist asap. Cleveland Clinic was suggested, but I ended up at Vanderbilt Eye Institute in Nashville, TN. and seen by 8 Doctors and finally diagnosed with Keratitis Stage 4 IE, my eyes would literally melt within 2 weeks (I have pics but doubt anyone would like seeing them). The Dr. said you must go down stairs where they will draw some blood separate this from that and sent it to a Chemist that will make into eye drops to be use 8 times a day and the Dr. made arrangements that it be compounded within hours and to wait... within a week they were like new and after a few months the Doctor took me off the drops and began reducing the 60 MG of Predisone a day down to 5MG along with a few other meds. I'll stop here but there's more.

It's been a long road for me but prayerfully you will not get to the point I did, well I mean, you may not even have anywhere close to the diagnosis I had, but I shared this with you because things can get serious even when seeing eye Doctors, so I guess I'm strongly suggesting you to see the best Eye Specialists you can possibly find.

Heck, I've been told by doctors that Sjogren's is little more than an inconvenience... not! If you run into one of these... run!

Yes, I have several other issues and lots of pain in knees hips, weakness, extreme fatigue. I must add that there is no possible way I could have endured through the years without the Lord Jesus

Be at peace - worry, stress and anxiety will make things worse.

Best regards,
Jeremiah

PS, there is financial help out there.

Hi Eden, I'm a newbie. Im 30 with many if the same problems you are having. I have had a diagnosis of fibro for almost 3 years but have had it longer. I too have many symptoms of autoimmune. I have elevated immflamation, lupus anticoagulant,I swell and am very arthritic. I also have severe dry eyes skin and mouth. I have plugs in my tear ducts and still have to use eye drops several times per day. I get sores in my nose more than my mouth. Just so dry. Painful intercourse....I could have written your post honestly!!!! I just had to stop working. I loved my job but the 24/7 severe pain,stomach trouble, panic attacks,depression,migraines blah blah blah...I just can no longer do it! Something that caught my eye is the fact that u said u have infections all the time. Oh how I can relate. I had the flu twice,stomach flu twice,strep throat, and bronchitis all in January. I stay sick with a cold,sinus infection,sore throats,earaches....you name it. Wonder why we are sick all the time? I have a bunch of tests and appts coming up in march but I stay so anxious all the time...I'm already worried about them because I have to travel about an hour to get there. To most it's no big deal but with panic attacks and agoraphobia ugh it's just so much to deal with!!!! I will be praying for you my new fibro friend. Wishing you the best in the coming days. Keep in touch. I want to know how u r doing.

Hi Eden, sorry it took so long to reply. Glad to be of some kind of help. Looks like Alioop has a lot going on to and encouraged me to.

I'll be praying for you both.

I noticed you are from PA. - well, just the other day I came across a web site that helps people financially with medical expenses. I found it in Yahoo search under something like, helping people financially or strangers helping people or others (it wasn't government) also try financial help for people in PA. or which ever Stat your in ETC. - post here if you can't locate it & I'll see if I can help. After you find a site like what I'm talking about, click on Contact where it should say whom they help and where.

Get those eyes checked... lot's of places will check eyes at no cost, you'll just need to explain your issues which can get tiring... just don't give up

Take care and don't give up and when you do get down, just lift those eyes a little higher and He will give you strength and hope for another day.

I have many autimmunes with sjogrens, being a huge part of my life. The eye pain can be bad. Last year my eye doctor took special pictures of my eyes and the computer picked up macular degeneration as a result of that I searched the internet foranything that could help and the main thing that came up was fish oil, seems weird, but I bought two supplemental items and they've had a great overall helping my eyes with the dryness. Omega3 was one and "Right for the macula". These along with tear duct plugs have finally given me help.

Sjogren's can cause nerve damage...which is what I deal with as well...

I was suggesting the omegas3 to Eden, until he can get seen by a doctor, he really might benefit from that and a cod fish oil supplement.
Thank you, JJP for the well wishes and I hope you continue to improve.
Make sure you both also get good RA doctor for more help with the sjogrens with treatment. I wish you both well...
Of everything I have the Sjogren's and RA have been the worse, and the asthma coming on those heals....Try warm water compresses, I also boil an egg and wrap it in a towel right after boiling it, it retains the heat for a long time and it helps soothe the eyes so very nicely...
Eden, keep us posted how your doing also maybe look into going to a good teaching hospital for help.
Prayers and well wishes.

Wow, thank you thank you for all of the responses and guidance!!!!

Thanks AGAIN, JJP!

I haven't been on here for a while... my hands have been so cramped and painful, I've been limiting typing only to necessary schoolwork. Also, now my car may be freaking dying on me (it's old), so that's another stress that I cannot afford to deal with! I was dealing with that all day long.

Anyway, yes, I've heard about the fish oil. Oddly, I used to take it (for severe, persistent acne) and didn't have as many problems with my eyes... I did not link it together though. I did eventually just up and stop taking it though, and my eyes have been TERRIBLE. So perhaps it DID help them and I didn't even know it!!!! I will start it up again.

Systane Ultra does not seem to help me at all. It doesn't nothing for me! I use an eye ointment at night (the gel makes eyes blurry, so I tend to use it before bed) and that's the only thing that gives me some relief as of now. I'm trying to figure out what to do about getting insurance... you can suggest doctors to me all you want, but I cannot afford to see them right now. And clinics around here are soooo stigmatizing.

The only one I am seeing right now is a holistic chiropractor because he is very inexpensive and only has most patients come back a few times. I found out that I have SEVERELY misaligned neck vertebrae, which may be why I've had a headache for 5 yrs that hasn't gone away. Who knows. that's a different issue from the eyes though, of course.

I'll look into that link, thanks JJP!!!!

Maggie, thank you-- I drink electrolyte water every single day to help with my dry skin, etc. (I have a severe, constant, unquenchable thirst no matter how much I drink-- anyone with that problem too)??

I certainly use sunglasses. I can't even sit in a room during the daytime with the blinds open. They all must be shut, the light bothers my eyes so much.

I have tried to exercise in the past, but I also have neurological problems that resemble MS or something like it, so I really am truly one of the rare people that functions worse upon exercising. I am so heat intolerant that when I sweat, I get bizarre symptoms like... my legs literally won't work (they feel like jelly), etc. The symptoms don't go away until I cool down. But if I were to start exercising and sweating again, they come back full force. I've even tried keeping fans/ air blowing in my face during exercise, but that makes me feel even worse because I have so many problems with my internal body temp.

I also need a wheelchair just to walk around a grocery store now some days, and I had a doc tell me to actually NOT exercise until I figure out what the hell is wrong with me! Because of the severe symptoms I get.

Weird, I know. But not being able to stand or walk upon exercising doesn't seem worth it to me (that's not the only thing that happens too-- my eyes start shaking back & forth repeatedly and they get so blurry that I cannot make out anything that's right in front of me, etc.).

I try to do the best I can for now with what I can. Sadly, I can only get so much advice from those with ailments in which I'm not even sure if I have the same disease! If that makes sense. I thank you always for the advice, and I will still pop in a lot-- but I just WISH I KNEW what all I am dealing with, so that I know the proper treatment.

I do not have any teaching hospitals around me, believe me, I wish I did! I live in a very small town in Northeastern PA and there is literally not much around me at all except for clinics and hospitals that have treated me like crap because my pain is "invisible." Also, I am Bipolar with a history of suicide attempts and hospital stays, and some healthcare professionals don't take my physical ailments seriously.

How did you guys get the tear duct plugs put in?

Sorry I did not "respond" to everything- there is so much! But i read ALL & appreciate it!!!!!!

Love,
Eden

Unbelievable what chronic sufferers have to do to get proper coverage/ care/ treatment!!!! Even WITH insurance, I know it can all be a battle as to what's covered, out of pocket costs, etc.

I am going to shoot for medicaid or medicare. I'm going to go down to the wonderful welfare office in my spare time... (which will be tough now because my car isn't working!!!!!-- it's always something- huh!?)

I used Vit D for a while too... I just suck at keeping up with things, I guess. But honestly, I was on it for a long time and it helped my acne at times but not my pain (didn't seem so anyway). I have also done magnesium supplements, but I have to watch with those... I have such bizarre symptoms and severe sensitivities that i get reverse effects with a lot of medications and supplements. I have noticed that my pain is WORSE after taking magnesium. Weird, I know!! But I have experimented enough with it on and off for long periods to PROVE that it does, indeed, worsen my pain!!!

I wonder why?

Anyway, fish oil I am definitely starting up again! The eye problems aren't what causes me to lose jobs. It's my immune system and/or joint pain. Physical jobs are out because my pain has become so severe I need a wheelchair at times and I have lost jobs due to no longer being able to perform my duties. My immune system is so compromised that every time I am in new environments around new people/ germs, I get severely sick. People can have colds around me, and mine will quickly turn into pneumonia, bronchitis, etc. I've had jobs tell me, "you're too sick to be here always, don't come in until you're better"... but I often don't get better for months at a time (my infections stick around for long periods, and then keep reoccuring)... eventually, bosses just tell me to stop coming in altogether. Especially in some occupations, they just don't care! I almost got a job recently at a car dealership (to sit on the phones all day at a desk)... they train you before hiring you. When I trained, people came in sickly, and I developed a cold which turned into walking pneumonia, bronchitis AND yet another sinus infection all at once!! I still tried to come into training with all of that b/c I so badly need a job!!!! They told me to not come in so sick. I took a couple days off. Then they told me not to bother coming in ever again-- they had so many other trainees who "weren't sick," losing me didn't matter!!!!!

This is a pattern for me with jobs. I was a nursing assistant for yrs but had to give it up.

Eden

Yes, my legs get weak on occasion. I feel like I too need a wheelchair. I have been in the mall, scared to death that I won't make it to my car. But, I don't give up. I refuse.

I do hand stretch exercises for my fingers. I also have the carpal tunnel but as long as I do the exercises I feel better.

My eye plugs were put in by an eye doctor. I only have them on the bottom and am considering having them put on the top lids too.

Yes, Sjogrens is the pitts. My Rheumatologist said it is the twin sister to MS. He also said that all autoimmune disorders are going to be grouped together and called by one name in the future. This is because they are all so similar.

Hey, does anyone get rashes? I have one on my back that itches like a severe mosquito bite. The itch is unbearable. They are tiny little bumps. Also, I get another rash that feels like a bug bite, then a crusty, itchy thing appears. Eventually, it turns into a hyperpigmented spot that never goes away. This is also on my back. Are any of you familiar with this?

Hi Eden,
So sorry I am just now getting back to you. I have a kindle that I use most of the time and it wasnt showing our post. I have prob spent 3 hours looking for this. Anyway to answer some of your questions...I do think I have fibro because i have tender points,my skin is very sensitive but I think the diagnosis I will get in the future is lupus. I have swollen glands,when im in pain i swell(they say with fibro you feel swollen but arent) I also have a pos lupus anticoagulant. I dont have children. I was afraid to pass on the anxiety and depression to a child. Plus my husband of the last 7 years has had a vasectomy. If you want my opinion I think it sounds like you need to try to apply for disability.
I have never heard of skin picking....to me that sounds like anxiety attacks....to be able to inflict pain on yourself(i assume thats what it is. i will google it) I am having anxiety attacks often right now i guess its because i just found out im replaceable....my employer of 12 years put me as ~prn~ so in other words they fired me but without having to pay me unemployment. How would I get another job? Whos going to want me when I sick all the time and have to call out? I just feel so blah right now. I just started the process of disability. I have been praying about it and would appreciate your prayers as well that it goes thru the first time without a denial. My attorney says i have a good case and doesnt think there will be any problems. If there was just a job that you could work on the days you dont feel like you are dying???? right???
you also asked if I am around the fibro forum....isnt that what we are on or is there something else?
talk to you soon
alioop

Chartreux,

thank you for caring, of course along with everyone else here... You really have issues with infections? It's odd, I was always told that all of the infections i get are signs of autoimmune disease, and yet, most of the autoimmune disease people around healingwell seem to not suffer from recurrent infections. It left me wondering, why do I get so many? My whole life seems to be recurrent infections, swollen glands, fevers, etc. plus feeling like i am constantly sick with a cold...

I have not had much of a chance to get to the welfare office about medicare or medicaid yet.. it's awful because it should be my top priority (and it is) but college is throwing me through loops this semester... lots of BS to deal with, oblivious Professors, etc. No free time because I gotta worry about school all the time and what's going to go wrong next with it because I have a Professor who doesn't know what he's doing.

ANYWAY, I gotta get insurance. I am so sick of suffering

ALIOOP,

This in particular is the Sjogren's Syndrome part of the forum. If you click "diseases & conditions" you will see alll of the different conditions forums, like Fibromyalgia. I'm soooooo sorry about your job!!! Such BS!!! Hey, I'm used to it too... employers always get rid of me! At this point, I cannot hold down a job. I'm sorry, hun! Do you wanna talk about it more? You could just vent to me!

The skin-picking isn't part of anxiety attacks because I am almost constantly doing it... or I do it automatically now... it is worse when my anxiety is at it's best, but it's more of an impulse-control thing that is always around. It is an actual little-known psychiatric condition that's categorized, indeed, as an impulse-control disorder, called Dermatillomania. It is often seen in OCD patients or those with addictive personalities (I have both).

I get swollen glands very frequently too, but I haven't had any visible swelling. Although my rings on my fingers fit some days, and then won't come off on other days when knuckles look very bright red. I am THOUGHT to maybe be in the beginning stages of RA, but who knows at this point when I can't get tested for anything!!!!!!!!!!!!! But my hands are starting to look a bit deformed, like claws. They don't straighten out anymore when I hold my hands out.

I, too, am afraid to have my own child. I have many many many problems-- health and psychiatric. But god, I always wanted to be a mommy

GOOD LUCK WITH GETTING DISABILITY!! I've heard it may be a looooooooong journey, but worth it!! I'm rooting for you!!!

Maggie,

I don't know what type of rashes you get, but I suffer with recurrent rashes and hives. Very sensitive to foods, laundry detergents, clothes, and the list goes on. I am always itching!

As Chartreux said... if it's crusty and on your back and really really bothers you that much, bring it up to your doctor! Watch out for shingles! It is a very painful itch? Either way, just get it checked to be on the safe side

Thanks, everyone!!!!!!!!!

Eden

thanks, maggie! and no prob about you being on your blackberry! i've been so lazy lately, i just type in all lowercase letters usually

i am not dx with sjogren's (not yet anyway), but yes, you are correct... it was I who said that I get constant infections. i, too, mostly struggle with sinus and bladder infections! the same as you!

but over time, i have experienced more and more different types of infections too. it's like never-ending.

do sjogren's syndrome people often have sinus and bladder issues?? i also have some kidney issues too that have not been figured out...

i'm glad you got your rash checked! i remember reading about your rash somewhere else, and telling you that you should get it checked! so they did not say it was shingles?! that's good at least!! i'm sorry you deal with idiot doctors too! same thing where i live! i'm in a small town and i receive such terrible care around here, i eventually just stopped going to my primary care doctor even. i often let a lot of problems go, which i should not because of all of the infections i get that never get cleared up completely! but i'm on a mission still to get insurance.

those symptoms you describe sound horrid, and absolutely crazy!!! one pupil bigger than the other???! those are from your sjogren's syndrome?! wow! i have my share of crazy symptoms, but i'm not sure what all they are contributed to... lots of neurological symptoms too, like nystagmus (where my eyes shake back & forth on their own-- often seen in multiple sclerosis though- which i am also not dx with)... but gosh, there are so many symptoms... i cannot even list them right now! but gastrointestinal problems and eyes are worsening, as well...

does your rash still itch a lot!? i hope you can get it sorted out!!!

eden