im new here, anyone have these symptom? thanks for sharing

[Sue R]

hi everyone i just found this site, i am so happy to find all of you, as you i have many of same issues, chronic epstein barr, RA,fibromyalgia, sjorgens, low vitamins-B,D,FOLIC ACID CALCIUM,ETC, low iron, no iron stored, tendonitus, neuropathy, double vision, ringing ears, muscle weekness,pain,tightness,spasms, my bones hurt, nerves hurt, i work full time. all my engergy goes to my job then i crash after, but my husband is very ill, has artificial heart, so when i get home i need to help him, cant stop now, dont get to bed til midnight get up at 5 and start all over just likeome of you. i just am exhausted, that word doesnt even describe it, i can fall asleep standing.
low IGG,IGA,IGM, any one also have this immune problem?
i have noticed if i get upset stressed it gets worse, i have had many family members that have been gravely ill over the years,during the time ive been like this, i would do my life-kids, house, work, spend time at hospital even sleep there with them etc. every time i got much worse, mental and physical stress.
does this sound familur to anyone?
i now have sores on my face. no rash. just a sore will break out, and wont go away for a month or so, mostly around my mouth on sides or under near chin, anyone get this?
also i just noticed both of my big toe nails have a odd color alomost whit like they are lifting up . both on the inside of the toe, only on one side both same side, not fungus looks like they are lifting up like whitish color underneth nail.
thanks and take care sue

[beverley]

Welcome Sue,

Gosh how do you get through each day with everything you have to cope with?  I feel very healthy and hardly stressed at all in comparison!  Not sure about the face sores but the nails sound familiar.  Someone on this site a couple of years ago suggested using vick vapour rub on the nails morning and night.  It's very slow but it does work and it saves having to take yet another medication.  It took me a year to clear it all up and I lost a few nails in the process, but now, yup I just checked, I have 10 healthy toe nails!

Beverley

[wednesday mc haggis]

sue

welcome to the forum, and so glad you foudn us to get some advice and support, by god do you need some.

i have fibro and sjs , although im awaiting a lip biopsy to confirm that completely.

the sores on side of your mouth are commin in sjs, bilateral chelatis im sure its called, and yup its an sjs thing.

  and as bev said a few have the nail problem.

  yup stiff achy , pain in muscle bone and joints, fibro just makes that 5 fold, ringing in the ears (tinnitus) and some hearing loss came from sjs with me, due to dryness and repeated ear infections.

how your getting through your day with all this i just dont know, your one strong determined lady, and im not surprised you could sleep standing up, its how youve not collapsed i dont understand.

many members here have multiple auto immune issues, as someone always says they seem to run in packs. so you ll find alot of ppl understand exactly what your going through.

   I dont know how much your hubby can and cant do with his problems, and i dont know where you live and what social work help you could get with the house and his care, hopefully someone can offer some advice if you give us the general area you in.

  stress flares all AI symptoms up a real treat and it is our enemy if you will, it exacerbates everything. everyone here can relate to that, you need support lady ( and yes with all your coping with in your day a true lady is exactly what you are) can any of the family help you out any ?

fel free to ask any question you need an answer to this group of ppl are salt of the earth and everyone would be only too willing to answer them and give any help or advice you need.

glad your here to need someone who knows where your comming from illness wise to talk to, and youve found us

T x

 

   

[Scottietottie]

Hi Sue 

Welcome to Sjogren's world.

Who are you seeing for the problems you're having?  Are you seeing an immunologist or a rheumatologist or both?

You certainly have a lot to cope with. I don't think I could work full time anymore and I'm really lucky to be in the position that I can afford to work part time.

Take care - Scottie 

[Sue R]

wow you all replied so fast. thankyou for your advise, concern, and help. my husband as you asked- he is really bad off- besides the artificial heart he has several other life threatening illnesses, it is really bad for him. he can get up and walk around at times go to the store on a scooter but mostly needs help from me for everything he needs or does.. he would do it for me. he is a great guy it is an awful thing for him. ---yes i see hemotologist, neurologist, rhuemotologist. immunologist, i did get one infussion for the IGG. but then the ins. decided not to  pay for more even though they approved 6 months of iv treatment. i can not take embrel,,so on due to the immune disorder prone to infections. i have 2 children 22 and 25, they help. my son comes and visits often during the week does some stuff in house. my daughter, boyfriend and my 8 month old grandson oliver, the light of my life. are going to move in . i thought that would help them as much as me. plus having that baby around brightens my and my husbands day. he is my therapy. my doctor said i should be on perminent disability but of course no one wants to do or sign those papers..my son is a vegan and totally believes in holistic medicine. he gets upset with the meds but what to do. he feels my body does not absorb correctly. that is a big issue possibly thats why so low in vitamins,, i do take vit B shots and level is fine, i took it by pill and nothing, so maybe he is right possibly i can take D by shot too?
do any of you have trouble with vitamin deficiency?? i was out of work for a month wasin the hosp for a week. then 3 weks home, my co. said i needed to go back or i would loose my job i was only there 8 months. so i just went back 2 weeks, ankles swollen...
sorry i'm rambeling on..
again thank you all so much, you all unfortunatly understand, not many do.
my family know i dont feel good but have no conception of how bad. no one could unless you have been there. and they get tired of hearing i cant i dont feel good. im sure you all know that too. i am so happy and fortunate to find you. i do feel blessed, you know sometimes it is hard to believe but things really could always be worse. believe me. i work in a nursing home. i thank God every day.

[Wynter]

I had the cheilitis when my mouth got really dry and boy did it hurt. I read on that somone put antifungal creme (over the counter 1%) on the sides of their lips and it keeps it away. I tried that and haven't had a problem since. Put just a little dab of the creme on twice a day. Also, just keeping lip balm on will work, but I have better luck with the creme. Now can anyone tell me how to get rid of red eyes?