Need help with Mystery Illness--Possible Sjogren's Syndrome??

Posted by DerbyFever @derbyfever, Jul 6, 2011

I apologize for the length but felt it necessary to give some description of what’s been going on–if anyone has ANY suggestions, I’d love to hear them and would be very grateful!!

I am a 40-yr old female and am currently a patient at Mayo (Rochester). I’m usually a high-energy, Type A, productive type although my life has been turned upside down with a mystery illness I developed around mid-March. Prior to that I’d had a sinus infections, treated with Levaquin, which didn’t seem to help. At the time I wondered whether the infection had progressed into a viral infection.

For a couple weeks I thought I was having a hard time recovering but then the symptoms progressed triggering a cascade of events unlike anything I’ve ever experienced: dizziness/disorientation (not vertigo), uncharacteristically debilitating fatigue (bedridden for days & couldn’t even go downstairs for a week), very weak, heart rate seemed to increase with any physical exertion, and what finally triggered me to see a Dr. was short-term memory problems. The memory problems were becoming more severe & frequent, and after a major incident I knew something was definitely wrong. I was also having a perpetual mental fog–difficulty concentrating and performing ALL life functions. At times it was like an altered state of consciousness & I had no concept whether minutes or hours had passed. At other times the fatigue was so severe I had trouble sitting up, holding my head up, or even keeping my eyes open.

To sum things up, here were some of the specialists I saw and their diagnostic impressions:
ENT–noticed poor coordination/balance and great difficulty walking straight line–felt it was either neurological or metabolic
Otolaryngologist–noticed nystagmus & blood pressure dropped upon standing; referred me to a cardiologist
While waiting for cardio. appt., I stumbled upon the only thing that seemed to help–I started adding salt & water to my diet and each day the dizziness subsided until it was completely gone at 10 days.
Cardiologist–gave echo, electrocardiogram, and Tilt Table Test. Told me to continue salt & water. On TTT at 11 minutes (< nitro) my systolic blood pressure dropped to 43 (baseline of 130) and my heart rate was 58. The test was immediately stopped and I was given IV saline. Diagnosis of neurocardiogenic syncope (aka vasovagal syncope, aka neurally mediated syncope). Dr. prescribed me midodrine but had poor response, tried raising and lowering dose over next few weeks but unsuccessful. Began suspecting adrenal dysfunction or Addison’s Disease, put me on Florinef. Not sure if this helped as I developed another sinus infection (again treated w/Levaquin & again seemed ineffective & possible progression into virus?)

In the process of all this my husband took me to the ER 3 times (4/1, 5/20, & 6/9–I was admitted for 2 nights on 6/9). In retrospect now, each time the IV saline solution helped although symptoms (in one form or another) returned, presumably when the saline left my body. On 5/29 horrible piercing back pain set in and while I was in the hospital 6/9 I was diagnosed with C-Diff. This of course depleted my body further of fluid although I got a steady dose of IV saline during my inpatient stay. Despite being discharged w/C-Diff, I felt better than I had in months & cleaned the house, enjoyed doing laundry, etc. It was then I started putting together that administration of IV fluid seemed to bring great improvement (the more the better) until it tapered off. 5 days after my discharge, I could almost “feel” the effects of the fluid leaving my body setting in (not sure if it’s dehydration or what??) and–determined not to plunge into the depths of the horrible symptoms again, I began consuming lots of Pedialyte. This–along with the Florinef (I think) helped.

While hospitalized the ACTH provocation test was administered to me although did not indicate Addison’s. The caveat, however, is the tech who drew my blood was too “busy” to make the draws at the proper times. The 30 minute was drawn at 43 minutes, the 60 minute was drawn at 75 minutes. My aldosterone was very low (1) but cortisol increased appropriately (albeit barely making the gains required).

My Drs at home have hypothesized everything from partial complex seizures to cervical spine d/o. I put all my hopes in the Mighty Mayo Clinic pinpointing my problem but after being here 10 days, I’m no further along in finding answers. In fact, I’m more frustrated at this point than when I arrived here. I’ve seen a Mayo cardiologist (who repeated the echo & electrocardiogram as well as a 24-hour Halter) who is emphatic that I do NOT have neurocardiogenic syncope and must be released from the “clutches” of a cardiologist. However, other than saying a cardiologist cannot help me, he had little other suggestion or help to offer me.

Here at Mayo I saw a neurologist (which I requested before coming here) who is similarly emphatic that there is nothing neurologically that can explain my symptoms. She had me go through the Autonomic Reflex Screen yesterday; I had no further appts. with her but pleaded with her nurse to call me with the results. The test showed suppression of postganglionic response although the Dr. suspects this was caused by taking Tylenol PM the night before and recommends retaking the test when I’m T-PM free for 3 days.

Meanwhile we thought we had a *breakthrough* when a Dr. from back home called to give me the results of an overnight oximetry test I’d taken pre-Mayo. My O2 levels were normal although I had an avg. of 15.5 episodes of sleep apnea per hour (over 6 hours, with a max. of 35 in hour 4). My Dr. at home recommended an overnight sleep study so I’ve been doing everything to try to get this done while we’re here at Mayo. I was fortunate enough to be called on a wait list (called a “checker” here at Mayo) yesterday to see a Dr. in the sleep d/o dept. for a consult. He looked at the results, talked to me for a bit, and assured me he is certain that I do not have sleep apnea. He showed me that my O2 levels did not fluctuate during the oximetry test and was not impressed at all with the test showing my episodes of sleep apnea. He pretty much discounted those results altogether since it was from a home health clinic (his words not mine), there was no explanation of the results on the forms, and the description of the test itself was vague. From that he concluded it to be invalid & did not recommend a sleep study.

So now I’m in no man’s land as far as understanding what in the world is going on inside my body. A couple Drs. here have suggested post-viral fatigue syndrome and have referred me to the fibromyalgia clinic (where I’m spending my days as a checker since the 1st appt isn’t for several weeks). The one common thread that seems to persist, however, is FLUID. I feel that surely that must mean something to someone…I had to stop the Florinef a couple of weeks ago prior to coming to Mayo (I’ve also stopped the salt tablets). Although I wasn’t convinced it was helping, I am now that I’ve started to to regress since I’ve discontinued it. From my own research on what conditions can cause chronic dehydration, Sjogren’s Syndrome seems to keep coming up.

Is anyone familiar with this? If so, what kind of specialist would I need to see? A rheumatologist? Opthalmologist? I didn’t think my severely dry eyes had anything to do with the current symptoms but I’m now wondering. I’ve had severely dry eyes my entire life and have been using Rx Restasis for several years. (I had LASIK in 2001 and the Drs. told me my eyes were so severely dry I should actually reconsider having the surgery.) I also have severely dry throat & am hoarse a lot (I don’t smoke or drink) and have to drink continuously water during meetings at work just to continue making presentations. This disorder seems to be elusive for any Drs. that I’ve seen thus far.

Thanks so much for taking the time to read this and if you have any ideas, I’d love to hear them.

DerbyFever

@mariah1

From personal experience and diagnosis, the key may be low sodium as you stated you felt better on saline IV–This is key to the beginning of Cushing’s Syndrome or Addison’s. Check out the symptoms of each. Each have to do with excretion of cortisol (either high or low) can zap you of you sodium/electrolyte balance and bring on fatigue(crushing fatigue) and brain fog. A good endocrinologist should be able to pick up on this. Both diseases are rather rare–and many times just aren’t considered. Hope this helps as I suffered for 8 years before getting a diagnosis.

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My doctor has done so many tests for that on me. They came out negative.. but i think that sjorgens is the key. Good info though thank you by the way it is now 2019! Lol hope your better

REPLY
@derbyfever

Thanks for this info., April. Do you mind me picking your brain in regard to your fiance’s Sjogren’s?? I’m curious to know, other than the obvious dry eyes & mouth, what other symptoms does he experience? The question I’m having is about my generally chronic dehydration throughout my body. My opthalmologist does feel I meet the criteria for Sjogren’s although I just saw my cardiologist yesterday and he doesn’t seem to think that Sjogren’s would cause dehydration…It’s getting frustrating, like I’m watching a game of medical ping pong…only I’m the ping pong 🙁

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@derbyfever in some cases such as MCTD you can have symptoms of Sjogren’s, but not test positive. I suffer so many issues due to autoimmune diseases. I am headed to MAYO soon myself.

Also, I noticed you mention that you felt better on the IV. Do you know if anyone mentioned if any of your levels were low like magnesium? The story is too long, but I went through a horrific time with my Dad. He was sent to the ER and after two weeks was diagnosed with dementia. I knew this was not the case. It took me moving him to another hospital out of state and several months of me researching, to figure out that he has a defective kidney that wastes all of his magnesium. He had a lot symptoms that you mentioned. He couldn’t walk without falling he was actually having hallucinations. It was so scary that in the end it seemed to be so simple yet no one put it together. I’m not saying this is your issue, but i would have all of your levels checked. The only thing that his body can absorb is one particular brand of magnesium. It really is scary when we know it’s something yet we can’t find answers. Always be your own advocate and don’t give up! Hopefully you will find answers soon!

REPLY

Hi, I was diagnosed with Sjögren’s syndrome and fibromyalgia. I was diagnosised about 4 years ago. Most of your symptoms I do not recognize. Except for the Dry eyes, throat/hoarseness and extreme thirst. I also have a closing up of my throat that make eating most foods impossible having to take tiny bite and swallowing them in minuscule pieces so my food does not get stuck. That’s all Sjögren’s syndrome. I wake up and can’t see because my eyes are so dry I can’t open them with out lots of eye rolls, otherwise it burns to bad to open them also I do rapid blinking, and rubbing before I can open them. But this wasn’t always the case with my eyes being this severe. Sjögren’s syndrome gets worse as time goes on because I believe I had this as a child also because I suffered A lot of cavity’s since a young age and contacts folded up in my eyes and fell out on the ground if I couldn’t continually keep putting drops in my eyes every few seconds. I just could not wear them. And bad teeth because My mouth doesn’t really produce spit like my eyes are with out moisture all has gotten worse much worse as I got older.
I just got through a 3 month fibro flare. I hurt like I’ve never have before. This was the worse flare I’ve ever had. I’ve never had anything so painful everywhere day in day out. I should have gone to the hospital but I never thought it would last that long having never suffered one so bad. And I’ve been a back pain patient for 18 years due to so many low back problems and I was left in chronic pain to where I no longer can leave the house without a wheelchair and most days I’m even to exhausted with muscle weakness & burning muscle pain to even get up to brush my hair. I too for months before my flare I’d wake up needing allergy meds and by evening need a nasal decongestant. The first thing I noticed looking back and I had no idea what was happening to me was the fact I could no longer showerabd I tried and tried it was excruciating because I was so ice cold even under that warm water that I stood there frozen, shivering, covered in goosebumps and I just couldn’t warm up. I am cold a lot and now have to keep the air at 76 & the heat at 75 To stay warm. My face and head burns a lot but I don’t know what causes that. I have severe anxiety, did I mention the fibro fog it is so bad. I can’t come up with the easiest of words and can’t recall what the last thing said was whether it was me or my husband. I have horrible restless leg syndrome and it drives me crazy. My husbands rubs my feet, ankles, calves, knees and upper thighs for as long as he can. But it never makes it go away but it makes me feel better while he’s Rubbing. He just rests and comes back many times a day. There’s so many other symptoms of fibro just look up fibromyalgia symptoms and go from there. Most of the tests and the salt you needed and most of what you mentioned I know nothing about. I just know I suffer so much and also have narcolepsy that comes and goes. And it’s awful when nothing can keep you awake. You feel like your missing out on everything but thankfully I have the type that comes and goes like 2-4 times a year. Among more than a dozen other health problems, i’m In a wheelchair if ever having to leave the house. Just complete exhaustion that’s grown worse and worse since diagnosis about 4 years ago. I was suppose to see my Dr. today, for many things but one knew ones is heart flutters. And I usually take 4 days before my appt to get my self ready since everything even washing my hands is so hard and painful. I ended up having to cancel again due to being to weak to push through one thing. I really do need help in the home now but I don’t know how to get it. Hope that’s a little outlook on some of what I go through with those two illnesses.

Feel free to write back. This is my very first message. I’m brand new hear. I pray you’ll start finding your answers and feeling better soon. Christine7673

Liked by lioness, grandmaR

REPLY
@christine7673

Hi, I was diagnosed with Sjögren’s syndrome and fibromyalgia. I was diagnosised about 4 years ago. Most of your symptoms I do not recognize. Except for the Dry eyes, throat/hoarseness and extreme thirst. I also have a closing up of my throat that make eating most foods impossible having to take tiny bite and swallowing them in minuscule pieces so my food does not get stuck. That’s all Sjögren’s syndrome. I wake up and can’t see because my eyes are so dry I can’t open them with out lots of eye rolls, otherwise it burns to bad to open them also I do rapid blinking, and rubbing before I can open them. But this wasn’t always the case with my eyes being this severe. Sjögren’s syndrome gets worse as time goes on because I believe I had this as a child also because I suffered A lot of cavity’s since a young age and contacts folded up in my eyes and fell out on the ground if I couldn’t continually keep putting drops in my eyes every few seconds. I just could not wear them. And bad teeth because My mouth doesn’t really produce spit like my eyes are with out moisture all has gotten worse much worse as I got older.
I just got through a 3 month fibro flare. I hurt like I’ve never have before. This was the worse flare I’ve ever had. I’ve never had anything so painful everywhere day in day out. I should have gone to the hospital but I never thought it would last that long having never suffered one so bad. And I’ve been a back pain patient for 18 years due to so many low back problems and I was left in chronic pain to where I no longer can leave the house without a wheelchair and most days I’m even to exhausted with muscle weakness & burning muscle pain to even get up to brush my hair. I too for months before my flare I’d wake up needing allergy meds and by evening need a nasal decongestant. The first thing I noticed looking back and I had no idea what was happening to me was the fact I could no longer showerabd I tried and tried it was excruciating because I was so ice cold even under that warm water that I stood there frozen, shivering, covered in goosebumps and I just couldn’t warm up. I am cold a lot and now have to keep the air at 76 & the heat at 75 To stay warm. My face and head burns a lot but I don’t know what causes that. I have severe anxiety, did I mention the fibro fog it is so bad. I can’t come up with the easiest of words and can’t recall what the last thing said was whether it was me or my husband. I have horrible restless leg syndrome and it drives me crazy. My husbands rubs my feet, ankles, calves, knees and upper thighs for as long as he can. But it never makes it go away but it makes me feel better while he’s Rubbing. He just rests and comes back many times a day. There’s so many other symptoms of fibro just look up fibromyalgia symptoms and go from there. Most of the tests and the salt you needed and most of what you mentioned I know nothing about. I just know I suffer so much and also have narcolepsy that comes and goes. And it’s awful when nothing can keep you awake. You feel like your missing out on everything but thankfully I have the type that comes and goes like 2-4 times a year. Among more than a dozen other health problems, i’m In a wheelchair if ever having to leave the house. Just complete exhaustion that’s grown worse and worse since diagnosis about 4 years ago. I was suppose to see my Dr. today, for many things but one knew ones is heart flutters. And I usually take 4 days before my appt to get my self ready since everything even washing my hands is so hard and painful. I ended up having to cancel again due to being to weak to push through one thing. I really do need help in the home now but I don’t know how to get it. Hope that’s a little outlook on some of what I go through with those two illnesses.

Feel free to write back. This is my very first message. I’m brand new hear. I pray you’ll start finding your answers and feeling better soon. Christine7673

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Hello @christine7673, welcome to Connect. Thank you for sharing your health journey. I can't imagine how hard it is to deal with so much pain. I'm hoping you can find some answers here from other members sharing their experience for similar conditions. You mentioned you would like to get some help in the home. Have you looked into any state or local organizations for help? I know there are several in the county where I live in Minnesota. This page might be provide some information on obtaining the help you need at home.

Resources to help seniors stay in their own home
http://www.aging-parents-and-elder-care.com/Pages/Independent_Living.html

@grandmar, @lioness and other members may be able to offer share some of their experiences for similar symptoms.

Are you able to prioritize your symptoms to which one is most bothersome for you?

Liked by lioness

REPLY
@christine7673

Hi, I was diagnosed with Sjögren’s syndrome and fibromyalgia. I was diagnosised about 4 years ago. Most of your symptoms I do not recognize. Except for the Dry eyes, throat/hoarseness and extreme thirst. I also have a closing up of my throat that make eating most foods impossible having to take tiny bite and swallowing them in minuscule pieces so my food does not get stuck. That’s all Sjögren’s syndrome. I wake up and can’t see because my eyes are so dry I can’t open them with out lots of eye rolls, otherwise it burns to bad to open them also I do rapid blinking, and rubbing before I can open them. But this wasn’t always the case with my eyes being this severe. Sjögren’s syndrome gets worse as time goes on because I believe I had this as a child also because I suffered A lot of cavity’s since a young age and contacts folded up in my eyes and fell out on the ground if I couldn’t continually keep putting drops in my eyes every few seconds. I just could not wear them. And bad teeth because My mouth doesn’t really produce spit like my eyes are with out moisture all has gotten worse much worse as I got older.
I just got through a 3 month fibro flare. I hurt like I’ve never have before. This was the worse flare I’ve ever had. I’ve never had anything so painful everywhere day in day out. I should have gone to the hospital but I never thought it would last that long having never suffered one so bad. And I’ve been a back pain patient for 18 years due to so many low back problems and I was left in chronic pain to where I no longer can leave the house without a wheelchair and most days I’m even to exhausted with muscle weakness & burning muscle pain to even get up to brush my hair. I too for months before my flare I’d wake up needing allergy meds and by evening need a nasal decongestant. The first thing I noticed looking back and I had no idea what was happening to me was the fact I could no longer showerabd I tried and tried it was excruciating because I was so ice cold even under that warm water that I stood there frozen, shivering, covered in goosebumps and I just couldn’t warm up. I am cold a lot and now have to keep the air at 76 & the heat at 75 To stay warm. My face and head burns a lot but I don’t know what causes that. I have severe anxiety, did I mention the fibro fog it is so bad. I can’t come up with the easiest of words and can’t recall what the last thing said was whether it was me or my husband. I have horrible restless leg syndrome and it drives me crazy. My husbands rubs my feet, ankles, calves, knees and upper thighs for as long as he can. But it never makes it go away but it makes me feel better while he’s Rubbing. He just rests and comes back many times a day. There’s so many other symptoms of fibro just look up fibromyalgia symptoms and go from there. Most of the tests and the salt you needed and most of what you mentioned I know nothing about. I just know I suffer so much and also have narcolepsy that comes and goes. And it’s awful when nothing can keep you awake. You feel like your missing out on everything but thankfully I have the type that comes and goes like 2-4 times a year. Among more than a dozen other health problems, i’m In a wheelchair if ever having to leave the house. Just complete exhaustion that’s grown worse and worse since diagnosis about 4 years ago. I was suppose to see my Dr. today, for many things but one knew ones is heart flutters. And I usually take 4 days before my appt to get my self ready since everything even washing my hands is so hard and painful. I ended up having to cancel again due to being to weak to push through one thing. I really do need help in the home now but I don’t know how to get it. Hope that’s a little outlook on some of what I go through with those two illnesses.

Feel free to write back. This is my very first message. I’m brand new hear. I pray you’ll start finding your answers and feeling better soon. Christine7673

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Welcome Christine7673

You certainly have a laundry list of ailments and symptoms. I am not really clear , however. Have you been to doctors to get each of these ailments diagnosed or have you done research and diagnosed yourself?
I am not in the medical field, but it seems to me like you need to find a fantastic doctor who can give you a real good exam and lead you to doctors who can assist, as well.
Do you live in an area where you can get to a place like Mayo Clinic. I think it is important that you find a group that communicates with each other so the left hand knows what the right hand is doing.

Good luck and Happy Weekend!
Ronnie

REPLY
@christine7673

Hi, I was diagnosed with Sjögren’s syndrome and fibromyalgia. I was diagnosised about 4 years ago. Most of your symptoms I do not recognize. Except for the Dry eyes, throat/hoarseness and extreme thirst. I also have a closing up of my throat that make eating most foods impossible having to take tiny bite and swallowing them in minuscule pieces so my food does not get stuck. That’s all Sjögren’s syndrome. I wake up and can’t see because my eyes are so dry I can’t open them with out lots of eye rolls, otherwise it burns to bad to open them also I do rapid blinking, and rubbing before I can open them. But this wasn’t always the case with my eyes being this severe. Sjögren’s syndrome gets worse as time goes on because I believe I had this as a child also because I suffered A lot of cavity’s since a young age and contacts folded up in my eyes and fell out on the ground if I couldn’t continually keep putting drops in my eyes every few seconds. I just could not wear them. And bad teeth because My mouth doesn’t really produce spit like my eyes are with out moisture all has gotten worse much worse as I got older.
I just got through a 3 month fibro flare. I hurt like I’ve never have before. This was the worse flare I’ve ever had. I’ve never had anything so painful everywhere day in day out. I should have gone to the hospital but I never thought it would last that long having never suffered one so bad. And I’ve been a back pain patient for 18 years due to so many low back problems and I was left in chronic pain to where I no longer can leave the house without a wheelchair and most days I’m even to exhausted with muscle weakness & burning muscle pain to even get up to brush my hair. I too for months before my flare I’d wake up needing allergy meds and by evening need a nasal decongestant. The first thing I noticed looking back and I had no idea what was happening to me was the fact I could no longer showerabd I tried and tried it was excruciating because I was so ice cold even under that warm water that I stood there frozen, shivering, covered in goosebumps and I just couldn’t warm up. I am cold a lot and now have to keep the air at 76 & the heat at 75 To stay warm. My face and head burns a lot but I don’t know what causes that. I have severe anxiety, did I mention the fibro fog it is so bad. I can’t come up with the easiest of words and can’t recall what the last thing said was whether it was me or my husband. I have horrible restless leg syndrome and it drives me crazy. My husbands rubs my feet, ankles, calves, knees and upper thighs for as long as he can. But it never makes it go away but it makes me feel better while he’s Rubbing. He just rests and comes back many times a day. There’s so many other symptoms of fibro just look up fibromyalgia symptoms and go from there. Most of the tests and the salt you needed and most of what you mentioned I know nothing about. I just know I suffer so much and also have narcolepsy that comes and goes. And it’s awful when nothing can keep you awake. You feel like your missing out on everything but thankfully I have the type that comes and goes like 2-4 times a year. Among more than a dozen other health problems, i’m In a wheelchair if ever having to leave the house. Just complete exhaustion that’s grown worse and worse since diagnosis about 4 years ago. I was suppose to see my Dr. today, for many things but one knew ones is heart flutters. And I usually take 4 days before my appt to get my self ready since everything even washing my hands is so hard and painful. I ended up having to cancel again due to being to weak to push through one thing. I really do need help in the home now but I don’t know how to get it. Hope that’s a little outlook on some of what I go through with those two illnesses.

Feel free to write back. This is my very first message. I’m brand new hear. I pray you’ll start finding your answers and feeling better soon. Christine7673

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@christine Welcome I use Systane drops for my eyes 4_5 times a day when they burn Dr told me to get Anti itch drops they have at drug store I'm so sorry about your fibro flare In Ohio University they found a molecule in the blood from us who have fibro so there is research out there hopefully they will find something to help us get rid of fibro as zi hear more I,ll post Take care have a better weekend

REPLY
@christine7673

Hi, I was diagnosed with Sjögren’s syndrome and fibromyalgia. I was diagnosised about 4 years ago. Most of your symptoms I do not recognize. Except for the Dry eyes, throat/hoarseness and extreme thirst. I also have a closing up of my throat that make eating most foods impossible having to take tiny bite and swallowing them in minuscule pieces so my food does not get stuck. That’s all Sjögren’s syndrome. I wake up and can’t see because my eyes are so dry I can’t open them with out lots of eye rolls, otherwise it burns to bad to open them also I do rapid blinking, and rubbing before I can open them. But this wasn’t always the case with my eyes being this severe. Sjögren’s syndrome gets worse as time goes on because I believe I had this as a child also because I suffered A lot of cavity’s since a young age and contacts folded up in my eyes and fell out on the ground if I couldn’t continually keep putting drops in my eyes every few seconds. I just could not wear them. And bad teeth because My mouth doesn’t really produce spit like my eyes are with out moisture all has gotten worse much worse as I got older.
I just got through a 3 month fibro flare. I hurt like I’ve never have before. This was the worse flare I’ve ever had. I’ve never had anything so painful everywhere day in day out. I should have gone to the hospital but I never thought it would last that long having never suffered one so bad. And I’ve been a back pain patient for 18 years due to so many low back problems and I was left in chronic pain to where I no longer can leave the house without a wheelchair and most days I’m even to exhausted with muscle weakness & burning muscle pain to even get up to brush my hair. I too for months before my flare I’d wake up needing allergy meds and by evening need a nasal decongestant. The first thing I noticed looking back and I had no idea what was happening to me was the fact I could no longer showerabd I tried and tried it was excruciating because I was so ice cold even under that warm water that I stood there frozen, shivering, covered in goosebumps and I just couldn’t warm up. I am cold a lot and now have to keep the air at 76 & the heat at 75 To stay warm. My face and head burns a lot but I don’t know what causes that. I have severe anxiety, did I mention the fibro fog it is so bad. I can’t come up with the easiest of words and can’t recall what the last thing said was whether it was me or my husband. I have horrible restless leg syndrome and it drives me crazy. My husbands rubs my feet, ankles, calves, knees and upper thighs for as long as he can. But it never makes it go away but it makes me feel better while he’s Rubbing. He just rests and comes back many times a day. There’s so many other symptoms of fibro just look up fibromyalgia symptoms and go from there. Most of the tests and the salt you needed and most of what you mentioned I know nothing about. I just know I suffer so much and also have narcolepsy that comes and goes. And it’s awful when nothing can keep you awake. You feel like your missing out on everything but thankfully I have the type that comes and goes like 2-4 times a year. Among more than a dozen other health problems, i’m In a wheelchair if ever having to leave the house. Just complete exhaustion that’s grown worse and worse since diagnosis about 4 years ago. I was suppose to see my Dr. today, for many things but one knew ones is heart flutters. And I usually take 4 days before my appt to get my self ready since everything even washing my hands is so hard and painful. I ended up having to cancel again due to being to weak to push through one thing. I really do need help in the home now but I don’t know how to get it. Hope that’s a little outlook on some of what I go through with those two illnesses.

Feel free to write back. This is my very first message. I’m brand new hear. I pray you’ll start finding your answers and feeling better soon. Christine7673

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@christine7673 I posted to you before but just reread you post. You sure have alot of problems I hope you are seeing different specialist as far as finding help have you contacted the Office of the Aging if you have in your state. Look at different medical agencies I use to work for them they provide ,medical of course also housekeeping .Restless legs drink plenty of water at least 32 oz a day you could be dehydrated , magnesium ,calcium ,Vit D3 drink some electrolyte water ,pickle juice I know sounds silly but works like mustard also Wintergreen alcohol for legs rub all over Epsom salts even for fibro more magnesium is need Feel better Praying for you to find relief

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@lioness

@christine7673 I posted to you before but just reread you post. You sure have alot of problems I hope you are seeing different specialist as far as finding help have you contacted the Office of the Aging if you have in your state. Look at different medical agencies I use to work for them they provide ,medical of course also housekeeping .Restless legs drink plenty of water at least 32 oz a day you could be dehydrated , magnesium ,calcium ,Vit D3 drink some electrolyte water ,pickle juice I know sounds silly but works like mustard also Wintergreen alcohol for legs rub all over Epsom salts even for fibro more magnesium is need Feel better Praying for you to find relief

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Derby Fever, I agree with Lioness that the Epsom salts can be helpful. If you can, you may try putting it in bath water for a relaxing soak. It is actually therapeutic. I have heard of pickle juice and vinegar reducing inflammation. Is that right, Lioness? How is pickle juice like mustard? Would you elaborate on this for us? Thank you.

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@debbyfever. @cinnamon215 Thanks for Asking Vinegar and mustard are both muscle relaxing they can relax muscle cramps as Epsom salts can it just a matter of choice I might have mentioned a friend use to take mustard packets with her when out if she got a cramp out came the mustard she could eat that and won't hurt to eat as vinegar diluted won't hurt both can be taken internally but vinegar and Epsom salts externally Dilute both in water Use a washcloth if you can't get in bath pickle juice same relaxes cramps I keep it on refrigerator use when needed drink a couple of swallows

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That is so interesting, Lioness! Thanks so much. I am a lover of mustard and vinegar. It also helps with my digestion. A lot of people I know take a daily teaspoon of local honey and another of vinegar for good health!

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I have same symptoms as you do and was diagnosed with Sjogren's. Diagnosed at Southeast Regional Arthritis Center. Was tested for Anti-Nuclear Antigen and i had a Positive ANA. My ANA is 170 . dry throat airway obstructed so they are sending me for sleep test to get a CPAP machine because i stop breathing during my sleep. I Also get VasoVagal . feeling of going to faint . fighting sleep all day long .blurry dizzy foggy brain and poor short term memory. Right Sacroiliac joint pain …. Also when right ureter is full , i feel weak like im going to faint.then when i empty it, weakness goes away and Also palpitations go away. All these problems. i feel. are neurological since i have many herniated discs in spine pressing on nerves. MRi of neck shows herniated discs and swollen Lymph nodes in neck under 5mm and suggests to see an otolaryngologist to check for damage to cartilage in neck thyroid area and corticoid area. Lots of swelling throughout body …..

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@chantalangeline

I have same symptoms as you do and was diagnosed with Sjogren's. Diagnosed at Southeast Regional Arthritis Center. Was tested for Anti-Nuclear Antigen and i had a Positive ANA. My ANA is 170 . dry throat airway obstructed so they are sending me for sleep test to get a CPAP machine because i stop breathing during my sleep. I Also get VasoVagal . feeling of going to faint . fighting sleep all day long .blurry dizzy foggy brain and poor short term memory. Right Sacroiliac joint pain …. Also when right ureter is full , i feel weak like im going to faint.then when i empty it, weakness goes away and Also palpitations go away. All these problems. i feel. are neurological since i have many herniated discs in spine pressing on nerves. MRi of neck shows herniated discs and swollen Lymph nodes in neck under 5mm and suggests to see an otolaryngologist to check for damage to cartilage in neck thyroid area and corticoid area. Lots of swelling throughout body …..

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Hi @chantalangeline, welcome to Connect. Thank you for sharing your diagnosis and symptoms. I'm sorry anyone has to deal with this disease. I'm hoping other members can share with you what work for them. I'm not sure if you are aware of the following website by The Sjögren’s Syndrome Foundation. They have a patient-written Sjögren’s Self-Help booklet that you can download here:
https://www.sjogrens.org/home/about-sjogrens/living-with-sjogrens
What is the biggest challenge you face most days?

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