Dehydration Sjogren's Feels like insides made of sand

Discussion in 'Fibromyalgia Main Forum' started by Hope4Sofia, Apr 20, 2007.

  1. Hope4Sofia

    Hope4Sofia New Member

    I have been to MANY drs and ruled out MANY possibilities for this illness. One that has kind of stuck is Sjogren's.

    I have very gritty, dry eyes, mouth and skin. I use eyedrops which helps some.

    What is really bothering me is my insides. I feel dried up. I don't know if that makes sense. My body acts dehydrated even though I drink 70 oz of water a day. It's like I'm not absorbing the water.

    I am very constipated even though I eat a lot of fruits/vegs and fiber.

    I also can't drink past about 7pm or I'll be up all night peeing. UGH! Last night I was up 5 times!

    My fatigue is beyond overwhelming. I can't stand for long at all. Can't grocery shop without getting nauseous. I do have POTS but it's worse lately.

    I'm nauseous a lot.

    What can I do???!! Is there some trick to hydrating myself? I'm desperate.

    I have three young kids that suck the life out of me (what little life is there). I don't want it to be that way.

    I will read and value all of your responses.

    Sofi
  2. ask2266

    ask2266 Member

    Have you had your bloodwork tested for Sjogren's? There are antibodies that show up if you have it. They are called SSA and SSB (or Anti-Ro and Anti-La).

    I have Sjogren's and I have all of the symptoms that you describe. i also just devloped cfids. (i've had sjogrens since 2002) I take Plaquenil because they used to think that I had Lupus (they don't prescribe Plaquenil for Sjogren's) Surprisingly, it made my dry eye, dry mouth and constipation much better. So I kept taking it even after they figured out that I don't have Lupus.

    Also, I got punctal plugs put in the tear duct holes in my eyes. It didn't hurt at all and it really helped, because the tears can't drain out of your eye, so they stay moist. Also, chew lots of gum for dry mouth. Also, I eat Flax Plus Raisin Bran cereal for breakfast for the fiber (12 g per serving) and I take probiotics which have helped with constipation and regularity.

    When you have Sjogren's, it is normal to dry out everywhere because all of your moisture producing glands are being attacked by your immune system. That includes every part of your body--drinking water won't help. It can also give you lots of other symptoms, including fatigue. Look it up online--there is a national association.

    Good Luck.
  3. Hope4Sofia

    Hope4Sofia New Member

    Thank you for your response.

    I had an ana test once about a year and a half ago. It was negative. They were looking for lupus.

    My neuro thinks I have Sjogren's but we haven't pursued more testing. He was more focuse on the dysautonomia issues.

    Frankly, I'm discouraged and worn out on the Dr visits. I spend so much time trying to convince them my symptoms are real.

    I have had tests come back out of normal ranges. I have had high alkaline phosphatase twice. I have insulin resistance. I have Polycystic Ovarian Syndrome. Severe cluster-like headaches. UGH!!

    I have also had high sed rates and ESR. And high growth hormone (but no pituitary tumor to be found). MVP and POTS.

    Anyway, I really appreciate your input. I will ask my Dr about plaquinil.

    Sofi
  4. JenniferAnn539

    JenniferAnn539 New Member

    Sofi,

    Have you been tested for Diabetes Insipidus? This condition is treated with a daily injection of DDAVP, (at least I think that's the correct name of the drug).

    You could read up on DI and see if your other syptoms, beyond the dehydration fit with Diabetes Inspidus and bring it to your doctor's attention.

    As far as hydrating, you could try saline ivs, I believe that is a viable treatment for POTS. It may very well help reduce the syptoms you are experiencing.

    Good luck,
    Jennifer
  5. LouiseK

    LouiseK New Member

    Just wanted to say I understand. First of all there is sero-negative Sjogren's so . . .

    There are times when it dries me up everywhere. It's not just "water" per se that we need which is why all the drinking and spritzing and eye drops and nose sprays don't fix everything. The glands that are broken don't just produce "water" -- it's moisture with slightly different compositions depending on the area of the body.

    I had carpal tunnel from the cells in the lining of the tunnel not producing enough of who knows what fluid.

    I get very dry in the back of my throat and actually use eye drops to drain back there so I wouldn't personally find the plugs a success for me although I totally understand why the poster likes them -- the eye dryness is horrible to bear sometimes. Nose spray, gum, special toothpaste, humidifiers (keep 'em clean -- they spread fungus and bacteria)

    To let you know you are not alone my colon and esophagus and lungs dry out. My stomach dries out. I can just feel it. I lost a lot of weight once because my throat and mouth were so dry I couldn't get anything down but soup which was too salty. I stood over a "personal" humidifier a lot of the day because my lungs were so dried out that even turning my room into a swamp with a humidifier wasn't enough.

    I have to tell you, it is said that the damage is permanent but I am here to say it is not. I truly believe that something happens in the body with these cells that is either healing or the cells turn over or the body compensates in other ways because I have been in truly bad shape and recovered to a large extent.

    I remember going to the support meetings and putting drops in my eyes like every two minutes and I was the only one even using them! I was really worried then. Now I only use drops a couple of times a day. Right now I am dealing with the colon and lung thing.

    Sorry for rambling but I guess my point is you are not alone and I really believe it can improve a lot over time. Also my Fibro expert doctor says that a lot of what is taken for Sjogren's is actually part of fibro -- if you are sero-negative maybe this is you. Encouraging, perhaps.

    Colon: Ducosate supposedly can be used every day x3
    Magnesium oxide pulls water into the colon
    There is a product called "Calm" at Whole
    Foods that you make a fizzy drink with which
    is this type of magnesium

    Sinus/Lungs: humidifier, Ocean nasal spray; expensive
    but doesn't irritate

    Eye drops: Get the no-preservative, individual doses
    if you use them often as the ones with
    preservatives dry/irritate

    Check any meds -- a lot of them are very drying to us
    antihistamines, antidepressants, tranquilizers,
    blood pressure meds, narcotics, etc.

    This is just a hunch but I think oil might be good for the colon dryness and everything else that is dry. Fish oil capsules. People used to take cod liver oil for constipation.

    By the way I really feel it when I eat salty foods. All over dry.

    Sometimes I put a thin wet hanky over my nose and breath through it.

    When I fly I have to do this and keep my eyes closed the whole time.

    Sip fluids frequently rather than gulping down 20 oz at a time like I do. I didn't realize it but I found myself drinking like two gallons of water in a day and screwed up my minerals/metabolites -- who knows what -- the doctor told me to stop it and I had to take some mineral supplements.

    When we have winds or dry spells I feel like heck. I would never go to the desert and I can barely function in air conditioning due to the dryness. I feel your pain.

    But really I think you will get better over time regardless of what they say at the associations -- you know they have to paint a bleak picture.

    Good luck my friend. Sorry for the ramble. Hope something here helps.
  6. LouiseK

    LouiseK New Member

    Okay, my last post was embarrasingly long.

    I just wanted to tell you there is a drug that helps this dryness. I can't remember the name. The side effects were kind of nasty when I tried it but maybe it's improved by a new version by now.

    It made me spaced out and smell really bad (excuse the bluntness) and mostly helped I think the eyes and it makes you sweat so it's possibly helping some of the rest.

    Just, FYI, but can't really recommend the stuff. I was desperate at the time as I couldn't leave my steamy room I was so dried out.

    Best wishes.
  7. ask2266

    ask2266 Member

    The drug for dry eye is restasis.

    There is also a drug for dry mouth, but I think it is pretty sketchy, as the doctors freaked out when they thought I had used it while, but before i knew that, i was pregnant.
  8. Hope4Sofia

    Hope4Sofia New Member

    Thank you for your responses.

    No, I haven't been tested for DI. I have wondered about it though. I will ask my Dr about it. I will look into the IV idea also. I know that it has helped in the past when I was hospitalized for the cluster headaches.

    Wow, Louise, you have been through a lot. Thank you for the encouragement and info. It does feel like my organs are dried out - not functioning properly. My skin is dry all over, nails are cracked.

    Thank you for the name of the dry eye med, ASK.

    I just wish I could get this under control. The fatigue is the most debilitating right now.

    Sofi
  9. Hope4Sofia

    Hope4Sofia New Member

    Those are great suggestions. I'm going to try some of them.

    Sjogren's is really common with SLE. It sounds like you have all the symptoms of it.

    I will probably get tested for it again - just so sick of all the Drs and tests. My neuro has been the most helpful so I'll probably go to him about this.

    I know rhuemy's are supposed to help but mine was kind of blah - nothing really to offer but compassion.

    Thank you again.

    Sofi
  10. rockyjs

    rockyjs Member

    Your symptoms sound exactly like diabetes insipidus. I have pituitary damage from a brain injury and encephalitis and I actually vascillate between DI and the opposite tcondition called SIADH. Oddly enough The treatment for me has been water restriction. I can drink all the milk I want (I drink skim) because it contains sodium and doesn't mess with electrolyte balances, but I can't tolerate more than a glass of water a day.

    Even though I can feel very dehydrated with DI the more water I drink the thirstier I get and the more I have to go to the bathroom (the scientific terms are polydipsia and polyuria). One screening test for DI would be to get some urine sticks that include a reading for specific gravity. That tells you if you are able to concentrate your urine...if not then vasopressin can usually help.

    The reason you get scratchy eyes, irritated lungs and raw mucous membranes is that you're losing sodium and calcium is coming out of solution, which is very irritating to the system. Saline IVs will help correct this.

    Another thing that will help is avoiding animal fats including dairy fats (which is why I only drink skim milk). The type of fatty acid in animal fats stimulates a pathway that increases aldosterone and affects vasopressin secretion. If I eat even a little cream or butter I immediately get very thirsty and can get water intoxication.

    Jan
    [This Message was Edited on 04/21/2007]
  11. Hope4Sofia

    Hope4Sofia New Member

    Wow! I didn't realize water made DI worse! I will definitely check this out with my Dr. I'll call on Monday.

    The only thing is what if all my tests come back fine? Then I'm totally dicredited with my Drs and still miserable.

    DI and Sjogren's seem to cause similar symptoms.

    Thank you for your info.

    Sofi
  12. rockyjs

    rockyjs Member

    Sofi, you can monitor your urine for a while yourself to see if it's too dilute. Look for Bayer Multistix 10 SG online for about $50 for 100 test strips (they also test for glucose, leukocytes, pH, etc - same ones that the OB office uses during pregnancy).

    There are two types of DI and if the doctor suspects it is a possibility they'll need to determine which type you have since the treatments are different.

    Jan
  13. Hope4Sofia

    Hope4Sofia New Member

    Thank you Jan, I will look for those strips.

    Sofi
  14. lv2sing

    lv2sing New Member

    is Evoxac. It stimulates the salivary gland to stimulate more saliva. The initial drug out for this was Salagen, & it is AWFUL. I experienced massive stomach pain, cramping,gas, sweating (extensive), & diarrhea. I couldn't tolerate it at all. I asked my rheumy @ that time if the Evoxac was any different, & she said no, so I didn't try it. Well, I have a new rheumy now, so around 4 yrs later, I tried the Evoxac, & it's wonderful!!!!
    I have had no side effects at all, & I am producing saliva that I have never had. I have had Sjogrens for almost 10 yrs now, & I understand completely the "dried out, internal symptom". My doctors have all said my Sjogrens symptoms are severe, & this drug was like a miracle drug for me. I was so dry that I was beginning to choke on food when I ate. I have had nothing like that happen since I started it.
    So, if you can find a good rheumy, I'm sure they would let you start this medication. They might have samples to try just in case you don't tolerate it for some reason. I am allergic/ or don't tolerate tons of meds, & this one, I can actually take, & it works great!! I wish you good luck.
    Some things to try are sucking on (always sugarFREE) hard candy. The lemon drops work well, but they are hard to find sugarfree. Also sugarfree gum. Drink water, but smaller amounts at a time. GenTeal severe dry eye GEL works great. Do not use drops w/ preservatives. I also use Restasis, & have punctal plugs in my eyes. Be sure to definately keep drops in your eyes if you have really bad dry eyes. My opthalmologist has also put me on steroid drops, because my dryness is so severe. If yours is the same, you can actually develop an ulcer on the retina, & untreated can possibly cause blindness. So, you don't want to ignore that symptom. A good sunglasses to try are the ones that fit over glasses if you wear them. They are wider on the sides, to help keep wind, etc, out of the eyes. I love mine. You can get them @ Wal-Mart. Stay away from spices, as it can burn your tongue , @ you may start developing sores on your tongue, on the sides, or even underneath.Thrush is very common too. Your dentist can give you a childs brush on fluoride to help prevent cavities (it's stronger than adults), but it also soothes sensitivities that is common in Sjogrens. I use Biotene mouthwash after brushing, it feels wonderful after brushing. It's very gentle, & it also helps heal sores.
    I hope these suggestions have helped. Good luck, I hope your problems aren't from Sjogrens or anything else. I wouldn't wish it on anyone, it's a very uncomfortable disease to deal w/. Oh, 1 more thing. My rheumy said for nose dryness, obviously saline spray, but at bedtime, put a very SMALL amount of vaseline on the very end of the nose, inside, to help w/ dryness @ night. Tends to be worse in the winter. I wish you well, & take care :)
  15. Hope4Sofia

    Hope4Sofia New Member

    Thanks so much for the med info. I will definitely look into that.

    It is also interesting that that you've had choking issues. I have had trouble swallowing for a while. I also have a lump in my throat - it's not thyroid - I had that checked. I think it's a lymph node.

    I've also had sores like you described - on my tongue, cheeks, and gums.

    Do you have any neuropathy? I have pain in my hands and feet that has only been relieved by Neurontin. I also get constant charlie horse cramps EVERYWHERE! Even got one in my abdomen recently!

    Does this sound related to Sjogren's or DI????

    Sofi
  16. rockyjs

    rockyjs Member

    I get horrible cramps with DI/SIADH. Have you had your blood sodium checked when you feel worst?

    Jan
  17. lv2sing

    lv2sing New Member

    I have radiculopathy in my rt leg from a ruptured disc, but my left leg , I believe has some neuropathy in it. I get cramping & tightening sensations in it. Sometimes, I get a numb feeling in BOTH legs, around the ankle on down. You are the 1st person I have come across that has like a charley horse feeling in the abdomen. There are times I want to take a bath to just feel the heat, etc, but if I actually sit in the tub,such as to shave, instead of lay down, I will get these horrible spasms/charley horse in my abs. I've never experienced anything like it.
    I went to the gym last year, just to try it, & I had a trainer work w/ me on some easy stretching type things for the fibro. I had to stop going, because I kept getting that feeling, & it hurt like heck.
    Well, I hope your blood work & tests come out all right, & I wish you the best. Sorry so long getting back to you, I haven't been on line for a while. Good luck!
  18. Hope4Sofia

    Hope4Sofia New Member

    I am definitely going to get more testing done to see what's up. I'm going to my ENT next week to have the lump in my neck checked out. I'm going to ask him about sjogren's and DI.

    Lv2sing, the abdominal cramp is unusual. It was intense.

    My lymph node in my neck bothers me and the node in my armpit has also been acting up.

    Anyway, thank you for taking the time to reply. I appreciate your thoughts and experiences.

    Sofi