Hi all,
I'm new here and am sorry to sound so down with my first post, but can Sjogren's Syndrome be responsible for my being so ill? It is hard to find a doctor that understands. I am fatigued all of the time; have terrible joint pain that seems to move around; my eyes, mouth and throat are as dry as a desert; my feet burn; my legs tingle; I constantly run a low grade fever; my ears hurt like they are swollen (usually one at a time, back and forth) and I have hearing loss; my eyes are always blurry with gooey discharge; I keep getting sinus infections, I can't concentrate or remember things and I get dizzy a lot. Also, my sense of smell and taste seem to be missing. And oh yeah, I'm bald (OK, that was preexisting). Seriously though, I'm so sick all day every day. Am I crazy or is this disease absolutely brutal?
I'm sorry for whining, but I'm in disbelief or denial. Am I crazy?
Barry
DryGuy,
Welcome! You are not crazy and yes sjs can make you that ill. It took a full year of being on plaquenil before I started feeling better. I seriously thought in September of 08 that I was going to have to stop working. I have had all the same symptoms that you describe in your post.
I was extremely lucky and found a wonderful rheumatologist on the first try. He started treating my symptoms right away even though my lip biopsy came back inconclusive and my bloodwork doesn't show much.
My best advise is to find a rheumy that takes you seriously and doesn't dismiss how you are feeling.
I am sure others will be along soon to welcome you as well.
SueAnn
Yes, it can make you that ill. I was very sick the first year. I've gradually improved. The fatigue itself can be just miserable. You can feel better though by treating your symptoms.
Hope you feel better soon.
Anna
DryGuy,
Welcome to our little family! Although I am sorry you had to find us by being sick. But at least you have found a place where everyone understands.
Yes it can definitely make you that ill. I struggle daily with the fatigue. I've had neuro symptoms off and on. Dry mouth. Sore throats. Fevers. Weird pains. Achy joints. And other problems. It effects each of us differently, and progresses differently for each person. I'm still waiting for the Plaquenil to kick in and there are days where I just sit and cry because I am so sick and tired of being sick and tired. The posts on here saying that others are feeling better help keep me going.
Has your rheumy put you on Plaquenil yet?
Hi Barry
I'm glad you've found us - a group of people who know exactly how you're feeling. You're not crazy and you're definitely not whining.
It could be that you're having a flare and all the SjS symptoms have arrived at once. Do you keep a daily symptom diary? Lots of us find that it helps to focus our thoughts, either because our memories are dreadful or because we tend to minimise how bad we're feeling. Once you have one you'll be able to see if there are patterns to your symptoms. It will also be easier to trace the effects of meds when/if you start them.
Which doctors have you seen so far? Just your GP or a specialist rheumatologist? You can post requests here on SjS World for recommendations for doctors in your area and people will be pleased to help. Treatment plans vary from doctor to doctor, and from country to country but most of us start on Plaquenil with/without Prednisolone (steroids). This is also a great place to get information about adjusting to new meds, coping with side effects etc.
Thinking of you - Chickpea
Hi Everyone,
Thank you so much for the warm welcome. I'm so glad (and sad) to know I am not alone. After reading some of the discussions here, I realize that I share the experiences of many of you not only in symptoms, but in doctor frustration too. I have been bounced around like a pinball for almost two years and could tell some real horror stories. Fortunately, I have an unbelievably supportive wife who kept searching for someone who would help.
It was a Nurse Practitioner who stepped up. She and my wife worked together to get me approved for four visits to Johns Hopkins. At first, the insurance company refused to approve any visit to them, as I live in Virginia. Eventually however, they were able to get approval, because there are no Sjogren's Syndrome specialists in this area. None! This amazes me, since many experts believe that Sjogren's is only second to Rheumatoid Arthritis in the number of people affected.
Anyway, I am here because of my burning feet. My feet suddenly felt like they were going to burst into flames, so I googled 'burning feet Sjogren's'. Low and behold I found that many others with Sjogren's suffer from tortured tootsies. In fact, the first thing I found was a post from this site with a message from the very doctor I am going to see next month. It must be fate! :D I am sorry if am rambling, but the Prednisone makes me rammy.
Once again, thank you so much for all of the kindness. I feel like a burden to the world right now, but I hope to get to a point where I can contribute here and everywhere. I think right now I am in need of help and that isn't easy for me to say. I would cry all day, but I can't. What irony.
Barry
Hi again,
I just wanted to mention that right now I am only on Prednisone. I was on Methatrexate, but my rheumy took me off because my liver enzymes were rising. No Plaquenil yet, but he did mention it as a possible medication. I have been, as some of you say 'collecting ologists', and have been diagnosed with Sjogren's Syndrome, Rheumatoid Arthritis, Osteo Arthritis, Sponylosis, GERD, vitiligo, parotitis and sinusitus. I also have only one working kidney, kidney stones, increased liver and increased pancreatic enzymes. Did I mention I'm bald? All of this and I'm in my 40's. Well, technically I'm in my 40's. I feel like I'm in my 120's and my mind seems to hover around 8 or 9 on a good day.
Take Care,
Barry
Hi Barry :)
Just wanted to welcome you to Sjogren's world too. I'm suffering from 'burning tootsies' too but I can't for the life of me get any medic to take it seriously. I keep noting it in a symptom's diary though! If they ever spontaneously combust somebody will be able to read its been a long time coming!
I think you'll fit in with this site just fine.
Take care - Scottie :)
Hi Barry, While doing water aerobics at first, did not wear water shoes. Set off what a retired navy nurse in my class suggested probably plantar fascists (sp). Went with her idea and purchased water shoes. Have you been into any type exercising that will cause this problem?
Mine spread from feet up to knees... and, hands began to get burning sensation and very red w/bluish look. Decided to go to my Duke Rheumy. Nerve-end-conduction tests indicated peripheral neuropathy. Have you had any burning anywhere else on body parts? Referred to Duke Neurologist and he prescribed Cymbalta 20 mg. Have taken it for four months and returned last month for recheck and was decided to increase to 30 mg. Have taken 30 mg. month and it is beginning to really help with the burning and discoloration in feet and hands.
These are two ideas of what might be cause. If I can help in any other way, just post. Joy
Barry, I am sorry to hear you are so sick. You have come to the right place! I have been feeling terrible this entire year and I, too am at my wits end! I was diagnosed with Sjogren's, then Macular degeneration, Hypertension, Fibromyalgia, Rheumatoid Arthritis, Retinal Epithelial Pigmentosa Separation, Aortic Regurgitation and Pulmonary Fibrosis. Today, the pulmonologist suggested I may have sleep apnea - but this I question. I also have dizziness, weakness, loss of balance, dry and gooey eyes, dry nose with nosebleeds, extremely dry skin, sore feet, swollen joints, hearing loss, vision loss, hair loss, stiffness, extreme fatigue, memory loss, weight gain, oh... and depression. Imagine that?!!!! Anyway, I have been collecting ologists this past year too and am so frustrated that they all offer me a big diagnosis to add to the list.
My husband and I are discussing a trip to the Mayo clinic. We spoke with our insurance company today to be sure the services are covered - and they are. I am so tired of all of this and want my life back. The past 11 months have been a nightmare for me and my family.
Good luck to you!
and did I mention the very dry eyes, dry mouth and that I just turned 50 years old? I think I have had this disease for many, many years before I was officially diagnosed. I think I hace been in a year-long flare. Hopefully, we will all feel better soon.
WELCOME!
Well by now from the responses I'm sure you have your answer.
When I first read your post I thought to myself, heck his sounds just like mine!
I know it does not help to know that it can do all of this and some, but at least you have a dx, many are suffering with no answers.
This is a crazy ride with a lot of twists and turns for a lot of us. We're not crazy, we're just on one long crazy ride.
And oh, I'm bald too, well almost. Mine by chose though! LOL!!!
Hope you find a great doctor soon!
Bernice
Barry,
You are in the right place. We understand exactly what you're saying. So glad you are getting help at one of the best facilities in the nation. You mentioned seeing a doctor's post on this site. Are you seeing Dr. Birnbaum at Hopkins? He's my doctor and I can tell you from experience that he's the best in the nation. I've been to great facilities in TX and even the Mayo Clinic, but still think Hopkins is the best. They now have a Sjogren's Center with doctors that completely understand every aspect of this syndrome. Good luck and keep us posted.
Hi Barry, You are not alone. ANother guy here!
We all have our own unique set of ailments but ususally they are as long as yours are. You'll find that you'll go in and out of a "flare" and you won't always feel this bad. I think I'm stepping into a bit of a flare myself. Right now my parotid glands are so enlarged it looks like I could take off and fly. It also causes lots of autonomic nervous system problems for me and yesterday my heart beat was all over the place. I thought I was going to have a heart attack. I've had my heart tested many a time and its is generally strong so I know thats not going to happen. My list goes on and on as many of ours does. Hang in there and look forward to the periods of good health.
Steve
It's official, Barry.......you're one of us. Each of us are different in how SjS manifests Personally, I think it depends if you have primary or secondary Sjogren's as to how bad it may affect us, but that's simply my opinion.
I'm a 40 something mom and wife who was diagnosed with gastroparesis (GP) in 2006. Because of a research study for GP, I had a slew of labs drawn which showed a lot of abnormalities and led to a diagnosis of lupus and scondary Sjogren's. I had made some complaints to my docs over the years, but everything was either poo poo'ed or blamed on other issues like meds
Barry,
I live in Virginia too-- Richmond. I have all the symptoms that you have (plus some). I am also new to this board and am going through the beginning stages of diagnosis, even though I've had this for almost 11 years. I had a rheumatologist who basically diagnosed me and then sent me on my way-- no treatment and didn't even call back with my test results. I am on a wait list for a rheumatologist who many of my other docs recommend. I would love to know from you later if you felt like the visit to John Hopkins was worth it. I am fighting my insurance plan now and figuring out how to navigate the system. Please contact me, as it would be good to have a "local" person to chat with.
Kelly
Hi, Barry,
I do have a lot of symptoms that are on your list too. I also started having burning feet and legs after I received an acupuncture treatment. The freaking acupuncturist burned me with moxa treatment. I guess it was too much to handle for my poor body. My whole body was burning from inside out. Now 2 months later it is just my legs. Burning, tingling poor feet and legs. Mostly lower legs. I guess the burning heat caused some nerve damage. It is getting worse with hot showers my legs feel like they are on fire. It is getting very annoying. I do walk for 1 or 1,5 mile a day, I believe it helps my circulation and my legs feel better.
I am waiting for a neurologist appointment to be set.
If you get any relief, please let us know.
Gail.
Hi Barry
I am yet another dude !
Just popping into say that there are lots o dudes with this..more than one would think.
Finding the best Doctors is key.
All me best