Exhausted and Overwhelmed

[Peach15]

I am having a really rough time recently. I have been experiencing a long list of symptoms for 2+ years and about 6 months ago based on symptoms and positive ANA, a rheumatologist suggested I may have Sjogren's. It feels as though my body is always attacking itself as it has been one health issue after another with no breaks for the past 2+ years. I started on plaquenil about 6 weeks ago, but haven't noticed a difference yet (know it can take 3 months minimum to start working).

I was dealing as best I could with some of the symptoms, dry eyes, sinuses, vaginal dryness and burning, and joint pain, but recently I've been experiencing the debilitating fatigue,earache, constant off balance/dizzy/brain fog, just feeling really ill. I thought maybe an ear infection, but the doctor couldn't see anything and said it was likely some fluid in my ear from inflammation, no infection present. The earache is gone now but fatigue and dizzy/off balance is still there . I have taken a few days off work to sleep and rest but now am sitting at work barely functioning. I have been spending every evening and weekends sleeping or resting cause I feel so bad but it doesn't seem to help. 

About a week before this extreme fatigue and dizziness, I had been experiencing muscle twitching, tingling, and weakness in my left leg for a month that eventually went away.

Being younger and being new to all of this, when new symptoms pop up its been a little scary to know what is due to Sjogren's and what isn't.  I am seeing a new rheumatologist at University of Michigan in a couple months and will be seeing a neurologist next week, as my primary doctor wants to rule out MS.

I'm just scared, ill, confused, and tired. Trying to live my normal life has become very difficult.

[araminta]

I'm so sorry you are feeling down.

I have not yet had a diagnosis of SS, am waiting to see the GP after blood tests, but have the sore red eyes, dry nose, dry mouth, extreme tiredness, and also on and off what feels like labyrinthitis - a bit like what you're describing, feeling dizzy and ear feeling sensitive.   So I do sympathise.

It does sound as though in the longer run help is available, especially after a definite diagnosis.   I have seen some positive stories here.    But it can take time to find the treatment that works best for each individual.   Try to keep your morale up any way you can,  try distracting yourself from the d****d thing as much as possible!   Are there any creative activities you could do? 

[finallyadx]

Peach15 - so very sorry to hear you are feeling so ill and that you are feeling no relief.  I am older - in my 40's and was diagnosed a few years ago.  I had been sick for years without anyone being able to figure out what was wrong with me, shunning me, giving up on me...then I found the PCP I have now who told me he would not give up until he found out what was wrong with me. I was like you - scared, confused and depressed.  Having a diagnosis and a treatment plan to help alleviate some of the symptoms or at least make my symptoms manageable was what I needed.

It took plaquenil almost 6 full months for me to notice a difference but there are several folks on this forum where they felt some changes within three months - so DO NOT GIVE up on it - you will most likely notice differences.

I also use cevelimine for dry mouth.  I take supplements that help me as well - vitamin d, vitamin b12, d-mannose to name a few...but ALWAYS check with your dr(s) prior to starting any supplements.

Also you will learn how best to care for yourself - you will learn what you can and cannot do in any one day and what your new normal may be and learn to pace yourself.  All with time.

Please keep us posted.

Sending positive thoughts your way.

Kim

[cari]

I am having a really rough time recently. I have been experiencing a long list of symptoms for 2+ years and about 6 months ago based on symptoms and positive ANA, a rheumatologist suggested I may have Sjogren's. It feels as though my body is always attacking itself as it has been one health issue after another with no breaks for the past 2+ years. I started on plaquenil about 6 weeks ago, but haven't noticed a difference yet (know it can take 3 months minimum to start working).

I was dealing as best I could with some of the symptoms, dry eyes, sinuses, vaginal dryness and burning, and joint pain, but recently I've been experiencing the debilitating fatigue,earache, constant off balance/dizzy/brain fog, just feeling really ill. I thought maybe an ear infection, but the doctor couldn't see anything and said it was likely some fluid in my ear from inflammation, no infection present. The earache is gone now but fatigue and dizzy/off balance is still there . I have taken a few days off work to sleep and rest but now am sitting at work barely functioning. I have been spending every evening and weekends sleeping or resting cause I feel so bad but it doesn't seem to help. 

About a week before this extreme fatigue and dizziness, I had been experiencing muscle twitching, tingling, and weakness in my left leg for a month that eventually went away.

Being younger and being new to all of this, when new symptoms pop up its been a little scary to know what is due to Sjogren's and what isn't.  I am seeing a new rheumatologist at University of Michigan in a couple months and will be seeing a neurologist next week, as my primary doctor wants to rule out MS.

I'm just scared, ill, confused, and tired. Trying to live my normal life has become very difficult.

I was in exactly the same position as you: no one believed I was ill and my doctor kept sending me away telling me I was depressed.  When I eventually managed to see a rheumatologist he diagnosed me within twenty minutes and put me on Hydroxychloroquine 400mg a day.  My symptoms were really bad from October last year where I was in constant pain, my whole body throbbing in waves which then turned into bone and joint pain.  I had to give up work because I felt too ill and managed to struggle through my studies until diagnosis.

I understand the fear you feel and the am still having blood tests to test for other conditions such as Cushing's and hormone problems.

I researched and asked around here and have started to make changes.  I started drinking Kefir everyday which is a priobiotic which I make with raw cow's milk but you can make with non dairy or water.  I take Apple Cider Vinegar which helps with acid reflux which I was experiencing due to the medication.  Organic Coconut oil is a natural antibacterial which you can use to cook with as well as use on your dry skin, hair and I use it on my lips and inside my nose and ears.  You can also use it for vaginal dryness after a shower and see how you get on with it.

I've also started taking Tumeric which is a natural anti inflammatory.  If you can take some time off work I would recommend it but I think it's important to remain as active as you can if you do. 

I am currently doing acupuncture to help with the fatigue and pain.  I am seeing a nutritionist on Thursday with diet recommendations that I can try to see if that helps. Once I start to feel better (not like I've been run down then reversed over), I'm going to start swimming as it's great for the joints and exercise is important I think.  If you can make sure you have your vitamins tested like Vitamin D and B12 because many with autoimmune are low in those but you may have other deficiencies contributing to your fatigue and pain.  I was very low in Vit D and was in agony, couldn't hold a pen or bend over.  I now take Vitamin D everyday in 5000iu dose which is high, as well as primrose oil and omega 3 but you need to find out what works for you.

I'm worried about my career and working full time but am taking a wait and see attitude as I'm waiting for my medication to kick in. For the first time in two years I had two half days pain free last weekend so I'm hoping that it may just help. I'm not too good today but today has been very stressful and I was eating 'bad' food over the weekend and drinking alcohol so perhaps I'm being punished today

[Deb 27]

So sorry you are dealing with so much Peach. I was in my 40's when a  lot of my health problems started, so I can relate! It's hard when you are so young and you feel so old. To top it off, I also had an early menopause with thyroid problems. I felt older than my age for sure.

It sounds like you found a very good Dr. and they have you on meds. Sometimes it takes years to get diagnosed.

Hang in there and take care of yourself.  This forum is awesome, you will get great support here!

[susanep]

I am so sorry to hear of all that you are going through. It's enough to make anyone depressed and scared. I do agree with the others that it does take time to get the things your body needs, and have it all sorted out. Each of us have our own body chemistry so things help all of us at different rates.

If your job becomes too much, remember the family medical leave act if you need more time off. It can help while trying to get some extra rest and allow for things to start working.

Hugs,
susanep

[Bigleyj]

Hi Peach15,

As you can see from the other posts many (maybe all) of us are very very frightened at first. I know I definitely was, I was a mess ... And sooooo tired.  I wish this wasn't happening to you, please try to be positive (that's easy to say and hard to do, I know).

I was very lucky late last year when I was first diagnosed my employer was very good and basically made me take sick leave.  The time off did help.  I hope you have a good employer.

The plaquenil is definitely working for me, still fatigued but nowhere near as much as before - took about 6 months for it to work for me.

Have you read the spoon theory, I found it really good.

So I sit here on my couch surrounded by clean washing ready to be folded messaging you, this is more important, the washing can wait- it won't be folded tonight!

I encourage you to treat yourself well and rest when you need to. Rest rest rest - really helps me, if I think I can't do any more but I do anyway that is not good.  I have learnt to rest when I know I should.

Jo

[quietdynamics]

Having symptoms without knowing the reason.. (we have the flu: cause known+not scary).. is scary, confusing and tiring/stressful.

Patients seek medical attention when symptoms present at an "awareness' level.. so the disease could be present for a long time prior. I know data states: Females ages 30+, but that is Dx.. not start of disease. So age for sjogrens can and is sometimes Dx in young children.
It is very difficult to be patient.
But, it does take awhile for the plaquinel to reach efficacy.
It took a long while for the disease to present to awareness level.. does that make sense?
The building inflammation mounts,  wrecks havoc.. then we seek help.

Be patient and gentle to yourself. Same as though you had a very long flu.. listen to your body, rest, eat healthy, protein, water, etc. If you can pamper yourself (a spritz of favorite scent before bed.. do it). An anti-inflammatory diet is recommended (and not difficult) Don't think about what you are taking 'out' of diet, focus on anti-inflammatory foods you are 'putting in"

GP Rx'd Nasonex to spray in my ear to help with Otitis Media,(recognized with Sjogren's patients) which can cause ear ache, dizziness, etc.  Really helped me. Humidifier (I use basic crock pot ) helps a great deal with dryness.
Beginning of this journey, due to symptoms MS was investigated. Sjogrens symptoms can mimic MS. My left leg had a bout of a type of paralysis, and arm as well. Tingling.
I am under care of Neurologist as well. So bases covered.

[Bluebird]

Hello, You are doing a great job of setting up your medical care. Keep going. I went thru the same MS eval last year and even an eval for ALS, as I was so weak and  had many neuro symptoms. Thankfully, one year later, I do not have MS or NMD/ALS, I was diagnosed with small fiber neuropathy due to Sjogren's. (MAss General - teaching hospital) This year, the fatigue has hit hard, with swollen glands and issues with my throat and kidneys, so I am going to an ENT and Urologist. All in all, I try to find providers who know about autoimmune disease but also keep their eye on the ball to make sure not everything is blamed on Sjs. Get all the big tests out of the way to ease your mind, then go in with a list of questions and you will be able to understand the components of Sjs. There are some nice threads on this site too, about fatigue. I read it when I was at my worst two months ago and it was very reassuring. I too, am ANA positive but have no other positive blood work. Also, I have a history of lyme disease - did not test positive, but the infectious disease specialist thought I had it and treated me. Many providers think the history of lyme is the background of many things - so get tested for that too!

[A66eyroad]

It sounds like you've got a good handle on taking care of yourself. Once the Plaquinil reaches theraputic dosage in your blood you'll see a huge difference. It's as subtle as the onset of the disease, though. You won't notice it all at once, but one day you'll say to yourself, "Gee, I've had a really good couple of days!" And then you'll remember that you've been on the medicine for about six months.

I think that the problem we all have is trying to figure out what belongs to Sjogren's and what is just a regular illness. My rheumy laughs because I come to him with EVERYTHING just about -- he's almostbecome my primary physician. He doesn't seem to mind, so I'm lucky that way.

I do still work full-time. It was very hard for me before getting my diagnosis and before the medicine kicked in. I came to work VERY ill for many years. You know how we do it --- just work, then go to the ladies' to throw up, then work some more. But slowly and surely my medicine started to work and I have very many more good days than bad. And I can even do stuff on the weekends now, where I used to sleep for two days.

So I have to agree with susanep that short-term disability and FMLA might be just the thing. I wish I had done that.

[Peach15]

Thank you all for your very kind words and for sharing your experiences. I'm just sad that so many other people have to go through this experience. The vertigo/off balance and extreme fatigue really took over this week so I managed to take 3 full days off of work to sleep and rest. I am feeling slightly better now and will be seeing a neurologist on Monday.

As you can all relate, it is always a little scary when you experience some of these symptoms for the first time. I am trying my best to stay positive and distract myself, but it is very challenging during the times when I can barely function. I do realize though that I need to quit being in denial about having an autoimmune disease and start to listen to my body and what it needs. As others have said, when doctors can't figure out what is wrong for years and you keep experiencing all these issues you start to question your own sanity. 

It doesn't help that along with all these constant symptoms I experienced stress fractures on both feet (led to osteopenia diagnosis) last Spring out of nowhere (no trauma and not a runner) that took all summer and fall to get out of casts and wheelchair. I still experience pain and swelling on and off and haven't been able to wear anything but tennis shoes, but am very glad to walk around at all.

I have been tested for so many different things and just elevated ANA and low vitamin D that has since been corrected. I have made many changes so far, saw a nutritionist for 5 months and have adjusted my diet to gluten free, organic whenever possible, rarely ever drink anymore, probiotics, supplements such as fish oil, 5,000 Vit D3, turmeric, etc. I also won't quit on the plaquenil.

I just had my 32nd birthday and feel like I am at least twice my age. Before all this started happening 2+ years ago, I was very healthy and active and enjoyed life. My husband and I wanted to try for a baby right around that time, but with everything going on with my bones, sjogrens, even just "trying" is very challenging.

I hope that once I get more answers and get an official diagnosis I will get used to and accept my new normal and have a more positive attitude.