Hi
I am new to the forum and have only been diagnosed a couple of years. I am 35 and work full time as a bioloigst. I travel a lot to remote places and work long hours. My Sjogren's is obviosuly affecting this, and also my ability to travel at weekends to see friends and family.
I am coming to terms with the fact that my Sjogren's is associated with pronounced and regular fatigue. The problem is that when this will become debilitating and make me unable to travel or work is not really clear to me so I am afraid to do anything, which in turn is making me pretty miserable!!
Does anyone have any advice in tracking the causes of bad fatigue? I asked my Rheumatologist and she said there are no patterns or known causes but I imagine people may have personal experiences.
Thanks
S
Welcome la1980,
I'm not a doctor, so what I say is my opinion. And we are all different, so my experience isn't what you will experience either.
So, the underlying issue for my Immune Disorder is inflammation. When my disordered Immune system is in attack and destroy mode, inflammation is the result. In fact, my Duke Immunologist and my husband who is a research Immunologist, theorize that my Immune System uses Cytokines, rather than auto antibodies, to attack my organs/systems. I have been disabled by these attacks.
The three co-conditions of inflammation are: Profound Fatigue, Pain and Depression.
Most of the time there is no 'regular occurrence' of inflammatory episodes, nor are there any 'warnings' that they are about to occur. In my case, however, I do have an episode of inflammation 48 hours after my infusion of IVIG. My disordered immune system, which is also deficient (CVID), sets off a reaction to infused IgG, 48 hours after the infusion. I have IVIG every four weeks, so it is important for me to control my inflammatory response, otherwise I would be so miserable I wouldn't be able to tolerate the IVIG which keeps me infection free.
Steroids, in the form of Prednisone or Methylprednisolone, will stop the inflammation. So in my case I take Medrol (Methylprednisolone) regularly: 2 mg every other day.
To interrupt a flare once it starts some of us take a prednisone taper. A taper is dosing of prednisone that starts very high on day one, and decreases each day down to zero.
This is a sample Medrol Taper schedule:
Day 1: 8 mg PO before breakfast, 4 mg after lunch and after dinner, and 8 mg at bedtime
Day 2: 4 mg PO before breakfast, after lunch, and after dinner and 8 mg at bedtime
Day 3: 4 mg PO before breakfast, after lunch, after dinner, and at bedtime
Day 4: 4 mg PO before breakfast, after lunch, and at bedtime
Day 5: 4 mg PO before breakfast and at bedtime
Day 6: 4 mg PO before breakfast
There are many kinds of tapers, but most last at least 6-7 days.
Because I take Medrol regularly, I usually don't usually need a taper (as described above), but since I have Medrol on hand, when I have a sudden increase in inflammation, I can create a taper that I manage myself, usually 8 mg to start, and then 4 mg in the evening, and I decrease over a 3-4 day period, down to my usual 2 mg every other day.
You can arrange with your doctor to send a taper to your pharmacy when you have an onset of a flare, causing fatigue (your presenting symptom). My presenting symptom is severe pain since the sudden increase in inflammation affects my severely arthritic joints. My joints always have pain, but when inflammation strikes, I am in agony.
There are many ways to manage most of the symptoms of a flare: Anti-inflammatories like Ibuprofen or Aleve (if tolerated) and anti-depressants, like Prozac or Cymbalta, which help with pain and depression.
Fatigue is the hardest to deal with (through medication), although some people with Immune Disorders who are also in highly demanding professions (ER nurses, etc) will take one of the stimulant drugs like Adderall. I haven't ever tried that, because my Immune Disorder did not become so severe until after I was retired.
Again, welcome to our forum. Here you will find ideas, support and humor.
Regards, Elaine
The fatigue overwhelmed me at one point and then I started on a supplement called Cistanchi. I take one a day and I am able to make it through most of the day.
I used to drive a lot. As this disease progressed I found my sun sensitivity cut into my ability to spend hours driving. A screen on my side window helped. After the bone spur on my right foot and damaged some tendons that have taken a very long time to heal so my wife has had to drive. I cover up in SPF 50 clothing including compression gloves and hat.
Now, I have a different belief in the cause and treatment of this disease. Like a two part poison, it takes two nano-bacteria to trigger an AI response. It seem that the nano-bacteria use the mitochondria DNA (gene 6 & 7) to reproduce. This damages the cell and triggers the immune system response. Because of this belief, I take Acetyl-L-Carnitine and R-lipoic Acid.
I take a list of other supplements for my RA, Diabetes, and heart issues. I use meditation, Reiki, carrot juice and CBDoil to help manage pain levels. I use tonations to kill infections and help with healing.
I hope this information helps you as I feel that we should work as long as we can. I hope this information helps you to manage your Sjogrens.
Are you taking Hydroxychloroquine (Plaquenil)? Doesn't help with dryness but is supposed to help with fatigue.
Plaq made me blind on first dose. It took 6 hours for my eyes to clear. I now check all medications and supplements for counter indications, side effects and drug interactions.
Hi, I don't have a Sjogrens diagnosis as all my bloodwork has been OK, however for over 3 years I've had a lot of the symptoms including the dryness and fatigue.
I've never been able to discover a reason for the fatigue. The spoon theory doesn't seem to apply to me, because even if I have a very restful time I can suddenly start to feel more tired. Having said that, my first year was definitely the worst. And not everybody with Sjogrens gets more and more symptoms - it may well be that your fatigue won't get any worse than it is now.
I don't know anything about Plaquenil and other medicatins, however I think it would help to try to pace yourself, and factor in rest times every week and even every day. Half an hour lying down can often help. Gentle exercise is good but I didn't find that pushing myself to exercise a lot was any good. Generally look after yourself well, eat the right things, I'm sure all this will give you a better chance of coping.
Some of my fatigue triggers are emotional stress, physical stress, overworking, sun exposure, exposure to allergens, not getting at least 8-10 hours sleep.
Several resources may prove of help to you:
1. Book -- A Body Out of Balance
2. Sjogrens Foundation information sheet about types of Sjogrens Fatigue, how to tell which is which, and how to handle each.
I used to travel extensively for my work, but reached a point where I could not do it anymore. I lost so much weight and became so ill I took a step back to a local position and about a 25% pay cut which then was cut further when my job was made halftime. I also lost my benefits so am on my husband's (lord willing those will continue).
I am much better now so might be able to do some travel, but not three weeks in a row like I sometimes did in the past.
I had a doctor once who described chronic illness, especially inflammatory illness, as a "full time battle on a cellular level".
He went on to say that even as we rest our bodies and minds and try to regain and recover, our cells are still fighting, still expending energy, and since it has to come from somewhere, it comes from our reserves. It's hard to rest up when even your cells seem to be against that!
It's also hard if not impossible to predict, and treating the fatigue itself is like locking the barn door after the horse has bolted. Treating the underlying condition takes more time, but will hopefully calm the cellular activity enough to let the body build up some reserve.
Another consideration is pain, which all by itself is exhausting! I have no explanation of the functionality of that statement, but I know that when we try to guard against or relieve pain, it increases fatigue greatly.
Well put, Linda.
Hi
Thank you so much for all your responses. What I find it perhaps knowing my limits and knowing how much rest I need and what I can still manage. I am on hydroxychloroquine but it hasn't made a huge difference which is a shame. Does anyone take any other medication for fatigue when hydroxychloroquine hasn't worked?
Thanks
s
So true Linda. I have also noticed that so many time I would be uneasy and have insomnia and it would go on for a few days only to end up with a huge attack o fatigue and illness. I learned through the years that I needed to listen to my body as I think those bad nights were the "cellular level" that you talk about. Our bodies are fighting so hard to keep our body in a normal position so to speak. It just wears us out mentally and physically while the war in our bodies rage on. Irish
Linda & Irish- So true this explanation!
As to what helps:
Testosterone cream helped in the past
and Orencia sometimes seems to help today.
Getting ALOT of sleep usually helps as well.
The only pattern I've noticed is that when I'm having a really good day, and feeling great...that's a pretty sure sign that I will have a very hard time waking up and leaving my bed tomorrow =/
Another note on flares: recently I am having 'breakthrough symptoms' of my small fiber neuropathy. The symptoms are itching and burning skin (a sense like a bad sunburn, but all over,) and stabbing pains in my finger tips.
Since I already take 3600 mg of Gabapentin a day, I'm reluctant to increase it, but I take one or two more Gabapentin, AND I add extra Medrol. That brings the symptoms down to a more tolerable level.
I think the 'break through' small fiber symptoms are probably the result of another inflammatory flare. I'm always fatigued, and have a moderate level of pain that is constant.
So as always, like most of us, my 'full time battle with my Immune Disorder, at the cellular level' is producing inflammation, the root problem that causes damage and symptoms.
I sometimes take a couple of days to realize what is going on. This sensation like a sunburn is everywhere, even in my highly neuropathic lower body, which is unusual, the back of my neck, and especially my face.
I'm tired of this.
Hugs, Elaine
Elaine- I never knew itching could be a sign of neuropathy....Just thought I had allergies!
From everything you write it seems you might be a good candidate for medical cannabis.
Have you tried it?
Another cause of fatigue for me- Breaking my AIP diet!