View Full Version : Chronic fatigue syndrome or sjogren's syndrome
Hi all.
Im really struggling. I'm diagnosed with ocd and before it used to be about hiv and bed bugs. I had group therapy for this and
Around November last year I got a bad virus they think was bronchitis when I went home. It was really rough and, as usual, I struggled to clear it. I took numerous courses of antibiotics around that time and started to ask my doctor... Why the hell am I always sick and sleepy!
Come December I suddenly had very dry Swollen lips and suffered a marked increase in dry eyes. This is something that I have had on and off for years.
My doctor ran allergy tests and numerous blood panels and all was okay. I quit a job (well we mutually separated but it was very difficult and I was very anxious there) in January and around that time I started to notice a drop in my activity levels and wellness. In fact, I wasn't feeling super well even before I took that job and found myself pretty run down all the time. I penned it down to my ocd which I was undergoing therapy for and sometimes was so bad it would have me in tears. That being said it never stopped me working.
I've been in and out of emergency for months with fear that I am now chronically ill. This fear of illness began when I was very young and my mother was sick with cancer.
But this time, I feel the symptoms could be real. For example.
Sore upper back (this gradually worsens for a week after I gym generally)
Post exertional malaise (i tend to feel fine after a workout but if I do too many in a row or hit it too hard I can feel floored for days. This tends to be variable)
Poor sleep quality. (though I have moved and the new place has a hard mattress and a building site which starts early every day)
Sweating and flushes (rare but happens)
Cloudy brain
Dissasociation
Dry mouth and eyes (I have had lasik and Accutane and I do suffer from sinusitis)
Dizziness (the last two are much worse since taking antidepressants)
I am told anxiety, stress and depression all play a role in this and though my doctor did float the idea of chronic fatigue he has rescinded 8t based on my health anxiety because he believes that's much more likely to be the cause of what I'm feeling given how inconsistent my experiencing of symptoms.
Of course Dr Google has confirmed to me that all of these things are in line with chronic fatigue syndrome. Tells you the answer you both don't and do want to hear. In addition, whenever bloods come bsck that show its not srojgrens my brain hops to chronic fatigue syndrome because that is much harder to prove with anything but a medical opinion and thereby much more open to interpretation.
Is it true that anxiety and stress can do this to your body? I guess I have had an enormous amount of stress on me the last year but I figured i was handling it okay. I think losing my job was a real trigger and perhaps I didn't recover from that. I'm really sad because I Jusy turned down a dream job because I don't feel I have the energy and mental acuteness right now to take it.
I have to say I feel my mind and spirit are even more exhausted this week as the job offered made me have a mental breakdown as such in which I'm in crisis mode with the local mental health division who have me on anti depressants and urgent appointments with psychologists.
I Jusy wish I could give myself peace. If it's not this it's "am I losing my hair" and "why can't I lose weight" and I transfix on my body way too much.
Anyone else suffer this? It makes me think I have cfs and because I also have dry mouth, sjogren's.
GiantMogwai
30-06-18, 22:10
Hi Mike, I have sore back and fatigue all the time. For me personally I usually get a sore back if i am sat down too much during the day or in bed too much. My back pain is usually lower back. The worse my back pain the worse i sleep. A bit of a vicious cycle. Sometimes I have to sleep on a hard floor for a night to overcome this, but after a few nights of that i figured that actually being a bit more active around the house or a 10 minute walk around the block helps, and also heat rub on the lower back muscles helps significantly. The heat rub made the biggest difference and you can get gel packs too.
nomorepanic
30-06-18, 23:23
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
GiantMogwai
01-07-18, 00:02
Hi Mike, just read your whole thing.
How old are you?
What is the cardio/anaerobic balance in your workout - how much of each?
How many sessions in a week?
Any steroids? Assume no but just asking.
How long have you been on the antidepressants?
How much quality sleep do you get?
My money is on you're not as young as you used to be so workouts are getting less productive, your sleep quality is bad hence the brain fog and fatigue, and dry mouth and dizziness can be from antidepressants.
However another cause of dry mouth and dizziness is dehydration - you drinking enough water - should be drinking loads in this hot weather with all your gym activity. Also, I personally get a bit dizzy when my upper body muscles are tight. Maybe get a sports massage arranged.
Also I'd go see your doctor to get some blood tests done just in case and give your doctor the full picture.
---------- Post added 01-07-18 at 00:02 ---------- Previous post was 30-06-18 at 23:41 ----------
Don't underestimate how much stress and tension can cause fatigue. I've been here.
Get your blood sugars checked too.
Also, I went through a phase at the gym where i got a lot of malaise because I'd be hitting the weights too much and not enough time on the bike. My aerobic fitness wasn't keeping up.
Plus with stress and tension all your muscles will work less effectively.
Maybe give yourself a rest week to do some relaxed bike work and get some recovery.
Remember weights work is also about recovery.
Hi Mike, just read your whole thing.
How old are you? 30!
What is the cardio/anaerobic balance in your workout - how much of each? I usually run for 30 minutes then do weights for another 45
How many sessions in a week? 3 times a week with weights, cardio 4 times, i typically walk over 10,000 steps a day
Any steroids? Assume no but just asking. Nope!
How long have you been on the antidepressants? A week!
How much quality sleep do you get? This has been reducing readilly. I think there is a construction site on my street that keeps me up. I will say i noticed these symptoms starting when i moved back in with my roomie. Her matress is super hard and in the apartment id been staying in before the mattress was like orthopedic.
My money is on you're not as young as you used to be so workouts are getting less productive, your sleep quality is bad hence the brain fog and fatigue, and dry mouth and dizziness can be from antidepressants.
However another cause of dry mouth and dizziness is dehydration - you drinking enough water - should be drinking loads in this hot weather with all your gym activity. Also, I personally get a bit dizzy when my upper body muscles are tight. Maybe get a sports massage arranged.
Also I'd go see your doctor to get some blood tests done just in case and give your doctor the full picture.
---------- Post added 01-07-18 at 00:02 ---------- Previous post was 30-06-18 at 23:41 ----------
Don't underestimate how much stress and tension can cause fatigue. I've been here.
Get your blood sugars checked too.
Also, I went through a phase at the gym where i got a lot of malaise because I'd be hitting the weights too much and not enough time on the bike. My aerobic fitness wasn't keeping up.
Plus with stress and tension all your muscles will work less effectively.
Maybe give yourself a rest week to do some relaxed bike work and get some recovery.
Remember weights work is also about recovery.
I truly believe that you might be right regarding stress and tension. This would explain the upper back pain and the constant fatigue.
What i will say is it probably doesnt explain the dry mouth and eyes, but i have had both accutane and lasik before, so my dry eye is more than likely down the that as ive had it o and off for years but never this bad. Dry mouth COULD be down to accutane, but i suspect it just made me more susceptible to anxiety causing dry mouth... idk
Im trying to rationalize all this. My doctor ran bloods for inflammatory conditions and nothing came up. An emergency room doctor told me he was sure this was all down to anxiety and depression given my history of numerous trips to emergency. My own doctor said the lack of results in my blood is why he initially suggested the potential of CFS especially given it tends to follow a good few days working out or when i push too hard at the gym...but isnt it quite normal for people to be exhausted after the gym.
I have been referred to both a psychologist and a rheumatologist.
Oh and i get bloody bad acid reflux when im super anxious as it turns out
this sound familiar to anyone elseÉ
---------- Post added at 03:21 ---------- Previous post was at 01:42 ----------
Also i now have a sore throat again. I am not sure if this from the indigestion from eating. Chronic dry mouth or dryness caused by anxiety or my antidepressants.
The dry mouth started before the antidepressants FYI
GiantMogwai
01-07-18, 13:44
Mike - i have been pretty much exactly here. Try not to worry too much. Your workout plan looks really healthy. I'd just recommend tweaking it a little to take into account your current stress levels - swap in some stretching or massage or something like that.
In addition the first couple of weeks of antidepressants can be really really difficult. In my case the doctor gave me some diazepam (aka valium) to help me relax a little while the SSRIs were kicking in. This may not work for you and you shouldn't use this long term but you need to cut yourself a break - pamper yourself a little.
When i moved in with my girlfriend she had an orthopaedic mattress. I had loads of sore upper back. Horrific. The general rule is if the upper back is sore the mattress is too hard and if the lower back is sore it is too soft. I'll take sore lower back any day. For me sleeping on a hard surface is knackering, and i've slept on the floor a few times and had spasms and dizziness getting up. All to do with upper back, shoulder and neck tension. You can look at changing your mattress but pick your battles.
With stress and the reduced sleep quality everything might feel louder and more stressful too and you'll be more knackered. In one of my phases of anxiety I would describe my general feeling of walking around as like a zebra slowly moving forward with a lion hanging off of me. A real barrel of laughs. I literally felt like my whole body was made of rubber.
The anti-depressants take a while to kick in (2-4 weeks from personal experience) but once they do they should help to ground you a little. Even if they don't work for you long term they should give you quite a bit of a break.
With the acid reflux, my GERD started a few years on from your age. Stress will affect it, as will fitness, and being overweight. In your case it is probably the stress.
Eat your last bit of food earlier - 7pm latest - avoid processed tomato sauce and high fat cheeses or other high fat products - or shift these to lunchtime only items, and if you want to give your body a break from food demands try following the FODMAP diet for a bit.
With Acid Reflux i find my own experience is different to what you see in the ads for medication. They focus on a burning in the chest. With mine the burning was in my chest, went up my sternum, made my voice raw, made my ears itch, made my arms ache, and my head feel knackered. I just wanted to curl up in a ball in bed. I have an old chest injury and that combined with the acid reflux would cause little muscle twitches on my chest, and sometimes full blown costochondritis where my rib cage would inflame, and i'd feel even heavier. Basically this was knackering and the after effects of one acid reflux attack could go on for days. You can control your diet reasonably well and you are fit so you can do something about this. Also maybe just drink water for a bit. Up to you. If your acid reflux becomes ongoing there is medication you can take but i'd recommend not until you really need to. My funniest moment with reflux as when i swallowed a rennies, it went down to my stomach, and then with the next acid reflux attack the rennies popped up like it had been shot out of the breath hole of a whale.
Lastly - and again this is personal opinion - in my teens and 20s the mind over matter approach was quite a heavy one with me - the harder i pushed things i knew i could move things forward - but in my 30s i realised i needed to be more strategic and realise that sometimes my mind and body wouldn't just be able to push through things because i tried as hard as i could. Bottom line on that is cut yourself a break - you are not superman - and at the very least give yourself a break whilst you are getting used to the SSRIs.
---------- Post added at 12:15 ---------- Previous post was at 12:08 ----------
Also, at this stage I would find psychologist and doctors a bit much at times. I personally found that back then i decided to visit a physio to help ground me. We just talked about muscles and it helped to ground me. One session to talk about my upper back pain and a sports massage after. It was a bit like I had a sore upper back and what could i do about it physically. Multiple sessions with a physio can be costly but a one off is sometimes worth it.
---------- Post added at 12:19 ---------- Previous post was at 12:15 ----------
I did the doctor and psych as well. Don't get me wrong. I just needed a physical viewpoint too.
---------- Post added at 13:28 ---------- Previous post was at 12:19 ----------
Also Mike - i know many people don't look at the side effects on the medicine they are prescribed but here goes from a well known SSRI. Have taken those that might match up best to what you are feeling.
Rare:
Dizziness
Confusion
Swelling of the face
Muscle pains
More common:
Dry mouth
Heartburn
Sleepiness or unusual drowsiness
Trouble sleeping
Less common:
Cough
General feeling of illness
Muscle aches
Pain in neck or shoulders
Sore throat
Tiredness
These can all be caused by other things but just to say if all of the things you are feeling are completely unusual to you in the last week or so then it could just be the SSRI. According to the note on the medicine these side effects tend to last a couple of weeks, from my experience I'd generally agree except in my case a dodgy tum went on for about 4 months.
---------- Post added at 13:44 ---------- Previous post was at 13:28 ----------
Also - yes there is more - when i used to go to the gym there were several times I had to lie down in a corner with a bucket from overtraining. Even when i got up with a few cups of water I'd go home and lie there for a couple of hours with the shakes. I started getting really careful about fluids and electrolytes and having an energy bar straight after a session or something really small and easy to digest a half hour before like a banana. Personally i found having a reduced intensity week every 3 or 4 weeks was a really good way of stopping burnout. Even bin out on the weights part entirely for a week, but always even if you are not exercising keep your fluids going. Good luck!!
Thanks so much for the advice on this man.
I guess the symptoms I am most worried about are..
1. Dry mouth and eyes (started before my ssri)
2. Back pain and stomach pain
3. The exhaustion I feel after overexerting myself for too many days in a row or doing too much in one session. For example i was floored for like 2 days after running a 10km.
I don't have typical acid reflux as it feels more like indegrstion and bloating which I guess is down to anxiety.
8 haven't slept properly in weeks because of all this because I'm transfixed on the idea it's chronic fatigue syndrome. When "crash'after workouts it's always the day after and I always feel like my body is throbbing like it's fighting a virus. It has to be said this part only really started happening after my doctor mentioned chronic fatigue in passing and I am not sure if my health anxiety and ocd is creating these symptoms... :(
GiantMogwai
01-07-18, 17:52
Doctors mentioning stuff like that always messes with me, but just a theory I guess. You sound like you need a rest. Also keep an eye on your heart rate.
Doctors mentioning stuff like that always messes with me, but just a theory I guess. You sound like you need a rest. Also keep an eye on your heart rate.
Yeah I guess the dry mouth is just an unusual thing. My doctor actually revised his guess (which was a broad guess) for cfs because he says there is not enough to back up that diagnosis and he things health anxiety and stress might be to blame.
Im really really worried it's something serious and chronic and can't shake the idea it's either cfs or sjogren's as neither have a good outcome.
GiantMogwai
01-07-18, 18:03
Dry mouth is very common for lots of medications, and for anxiety, and for dehydration. It is also a symptom of diabetes which you can easily rule out with a blood sugar test.
---------- Post added at 18:03 ---------- Previous post was at 18:01 ----------
Also, you can get dry mouth simply from sleeping with mouth open. :)
Dry mouth is very common for lots of medications, and for anxiety, and for dehydration. It is also a symptom of diabetes which you can easily rule out with a blood sugar test.
---------- Post added at 18:03 ---------- Previous post was at 18:01 ----------
Also, you can get dry mouth simply from sleeping with mouth open. :)
Sure but Mines started unprompted one day and lasts days long and can give me a sore throat :( statistically I'd be highly unlikely to have sjogren's but I guess nothing is impossible. The preliminary blood panels showed no sign of any inflammatory disease and sjogren's typically shows up in them around 70 percent of the time.
GiantMogwai
01-07-18, 20:14
I get why you are concerned, but all of those symptoms have a huge number of other causes, many of which are more probable and relate to other things going on with you. If you're concerned get it checked out. With me all my crying would help rule it out. A real water factory. :)
I now feel swelling in my right throat lymph node. I honestly have to drink water constantly just to talk right now. I know the antidepressants can make it worse but holy balls.
There have been several times over the years when my and has been at its worse, when I've been totally convinced I had CFS. Every time when my anxiety reduces, eventually the symptoms go away, although fatigue is stubborn and is the last thing to go for me. The fatigue of anxiety is absolutely intense and it causes so many physical symptoms. Last time I thought I had CfS, my legs ached for weeks. Anxiety and CFS have very similar symptoms so if you have anxiety, which you obviously do, that's probably what's causing them.
There have been several times over the years when my and has been at its worse, when I've been totally convinced I had CFS. Every time when my anxiety reduces, eventually the symptoms go away, although fatigue is stubborn and is the last thing to go for me. The fatigue of anxiety is absolutely intense and it causes so many physical symptoms. Last time I thought I had CfS, my legs ached for weeks. Anxiety and CFS have very similar symptoms so if you have anxiety, which you obviously do, that's probably what's causing them.
Thanks cattia.
I Just wish I could get to the bottom of the severe dryness. But it's good to know people around me who have anxiety also suffer fatigue. I think the ocd I have can be so mentally exhausting without me realizing it. I do have to say that I feel "sick" the day after working out too hard. For example one day I ran 10km on the treadmill and I was floored for days. I felt like my body had been drained of all energy. Then another time I worked out 4 days too close together (2 days without a break) and I felt like a steam train had hit me.
I think that's the most concerning thing for me too is the post exertional malaise. If I ever overdo 8t too much for too many days in a row it bites back on me. But when I have energy I just wanna go at it!
Does anyone else feel that?
---------- Post added at 05:51 ---------- Previous post was at 05:49 ----------
I guess the symptoms I'm facing are
1. Dry eyes and mouth
2. Huge anxiety and ocd lol
3. Fatigue. Usually the day after too much exertion or working out.
4. Muscle aches in upper back
5. Sore stomach and indigestion.
---------- Post added at 05:52 ---------- Previous post was at 05:51 ----------
Oh and it feels almost flu like the day after I feel exhausted. I can feel my glands kind of throb when it's coming on and I know I'm going to get run down cause either my tongue goes white or my skin breaks out lol. That's the precursor to being wiped for energy to me.
---------- Post added at 05:55 ---------- Previous post was at 05:52 ----------
Some days I drag myself to the coffee shop and I'm like a zombie. I also suffer from brain fog lately and poor memory
---------- Post added at 05:56 ---------- Previous post was at 05:55 ----------
Can anxiety really cause that level of fatigue?
GiantMogwai
02-07-18, 15:22
Mike - i think you maybe have to ride out the SSRIs for a bit and then if you still get this after a few weeks then get another medical opinion. Meanwhile maybe tone down your exercise routine.
To put this in perspective though I'd be wiped out for days after 20 mins of exercise. In my case it's just called being unfit, and yes i would be tired all the time for days.
If I were you in the meantime i'd go see the doctor and get him to look at your throat and check your glands. Doctors can see fairly quickly if there is something wrong in this respect.
Mike - i think you maybe have to ride out the SSRIs for a bit and then if you still get this after a few weeks then get another medical opinion. Meanwhile maybe tone down your exercise routine.
To put this in perspective though I'd be wiped out for days after 20 mins of exercise. In my case it's just called being unfit, and yes i would be tired all the time for days.
If I were you in the meantime i'd go see the doctor and get him to look at your throat and check your glands. Doctors can see fairly quickly if there is something wrong in this respect.
Hey man
My doc found nothing wrong before. Thats why he initially suggested chronic fatigue, because he couldnt associate it with anything in bloodwork or in physical exams.
He hadnt actually got much experience with CFS and seemed to be reading from an article describing it.
I have been referred to a rheumatologist and psychologist in the interim and hes working to tryin and get me into internal medicine asap because he just wants me to have peace of mind.
In our last session he revised his CFS assessment given how inconsistent the symtpoms are, but in terms of inflammatory markers for something like Sjrogrens everything has come back negative. About 70% of srjogrens sufferers would show up in one of the 2 inflammatory marker blood works ive had done. CT scans showed nothing other than sinusitis
I will say since taking my sinus spray my mouth has been less dry! I wonder if that has something to do with it.
just to add to this
my dryness and tiredness tend to cycle, like some days my mouth is so dry i can hardly speak then a week later im totally fine.
Hey guys.
So after the antidepressants were upped I slept for 2 nights. Yay. But then I went to the gym. Spacing it a day apart. Since I have been back I haven't slept well. Very tired and oddly yesterday I had a rip roaring sinus headache which irritated my left eye which dried out and closed up.
It was really exhausting. I am still very scared I have cfs and know my anxiety is probably making me feel worse.
GiantMogwai
09-07-18, 20:03
The eyes are the oddity here, but stress and anxiety are really huge contributors to fatigue sometimes. Keep in a dialogue with your doctor. See them every couple of weeks or so for a little bit. I really think you might be underestimating the toll the stress, anxiety, and SSRIs are having on you.
Hey thanks.
I'm on vacation to a dry and hot place and my left eye continuously dried out to the point it gave me headaches. I went to the beach and had a fun day of sight seeing and socializing.
I still have had broken sleep though my doc thinks it's antidepressants,and I felt totally fatigued today .like can barely talk or move tired.
Propped myself up on caffeine yesterday to combat the heat .
GiantMogwai
14-07-18, 22:07
Hey thanks.
I'm on vacation to a dry and hot place and my left eye continuously dried out to the point it gave me headaches. I went to the beach and had a fun day of sight seeing and socializing.
I still have had broken sleep though my doc thinks it's antidepressants,and I felt totally fatigued today .like can barely talk or move tired.
Propped myself up on caffeine yesterday to combat the heat .
Really hot in the UK too. Absolutely knackering heat. Drink plenty of water, spend time in the shade especially around noon, and keep your sugars and salts up. I recommend daiquiris or mojitos to drink with lots of ice.
---------- Post added at 22:07 ---------- Previous post was at 22:03 ----------
... and don't spend too much time on your mobile or computer, you're on holiday, plus too much screen time will make your eyes even drier. :)
WiseMonkey
15-07-18, 01:02
Yeah I guess the dry mouth is just an unusual thing. My doctor actually revised his guess (which was a broad guess) for cfs because he says there is not enough to back up that diagnosis and he things health anxiety and stress might be to blame.
Im really really worried it's something serious and chronic and can't shake the idea it's either cfs or sjogren's as neither have a good outcome.
CFS or Sjogren's are autoimmune conditions and neither is a death sentence. 95% of people with autoimmune conditions are women, so the chances of you having either of these conditions is remote. Also AI conditions have a hereditary component so someone else in your family would have something similar.
I have CFS (possibly Sjogrens or Lupus as well) which I've had for over 30 years. Symptoms from this come and go in flares. I am sero-negative, which means that nothing have ever shown up in my blood work. I was diagnosed on my symptoms and history.
Anxiety does make things worse and symptoms can emulate more serious diseases so I have to keep on top of things. Apart from this I try to live my life normally, work part time, exercise (walk for an hour each day when fine) and do stretching exercises, eat healthily, keep a healthy weight, and drink plenty of water, etc.
The only med I'm on is Doxepin 10mgs (tricyclic antidepressant) at night. This low dose is to help with sleep and to manage symptoms, not depression. Many people with autoimmune conditions take Amitriptyline which is a cousin of Doxepin but not so sleep inducing.
I use Poly Gel lubricating eye gel at night for dry eye and Systane ultra lubricating eye drops for daytime use if needed. Both these products are made by Alcon.
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