extreme fatigue and memory issues

[Butterfly]

I have been diagnosed with sjogren's and rheumatoid arthritis for about 4-5 years now. The past couple of years I have had problems with fatigue and memory loss. It has gotten so bad that I have been unable to work for about 7 months now. The fatigue is down to the bone exhaustion. I sleep 10-12 hours typically and when I have a flare I sleep about 15-17 hours-and still don't feel rested. There is no rime or reason for what I remember or forget. I often ask questions or say the same thing over and over again-frustrating my family and me. My 1st rheumy said it was all depression that neither symptom could be because of sjogren's. I saw 2 neurologists/psychiatrists who says it is sjogren's-no signs of depression or dementia (thank God). My 2nd rheumy said the fatigue is part of sjogren's however the brain fog is not. I have been on plaquenil for several years-it works quite well for the arthritis discomforts. No other treatment is suggested. I desperately want my life back! Anyone experience these symptoms? Any treatments work for you?
Any help you can provide is greatly appreciated!!

[Scottietottie]

Hi Butterfly 

Have you had a thyroid panel done recently?  Of course SjS causes fatigue and brain-fog but speaking from personal experience the period when I was least able to function was when my thyroid decided to go underactive as well. The brainfog was horrendous and I was fatigued and depressed.

Believe us - brain fog IS a part of Sjogrens as a lot of people in here will testify!!

Maybe if you're having a big flare you need something more than Plaquenil for a while. When did you last see your doc?

Take care - Scottie 

[KYMOM]

Butterfly, One thing I have learned personally and from this site is that the symptoms vary from person to person and they are many.  Brain Fog - there have been many posts lately on this so it is reasonable to believe that it is related.  When I overdo I notice that I can't function as well mentally. 
I hope you can find some relief from the fatigue.
Roxanne

[eyeamdry]

Butterfly, see my recent thread about brain fog.  My doc is suggesting a "yeast" problem.  I'm having it checked and plus thyroid as I've had a little problem with that in the past year.  I'm not to tuned into the yeast thing, but I'll listen after the tests come back.  Lucy

[Butterfly]

What type of test is done for a yeast problem? I'll look for your post eyeamdry. Thanks! I definitely think I'm having a big flare-it's lasted way too long. I have had several thyroid tests done within the last several months-one with my own md and one at the mayo clinic. They came back within normal range. I do have graves and hashimotos. I take synthroid daily. I saw my endocrinologist the end of February (and see him every 6 months to keep the thyroid levels in check). I saw a new rheumy the 1st of April and the old rheumy the end of February. The old rheumy didn't listen to my symptoms and kept saying it was all depression. On her request I saw a neurologist/psychiatrist. After several tests his conclusion is that the problem is sjogren's. My old rheumy pretty much said he was a quack (he is a professor as well as has his own practice at a prominent medical school) and insisted that it was depression. She sent me to the mayo clinic for a complete evaluation. After a week of testing-their conclusion autoimmune disorder-probable sjogren's and no sign of depression. Because of the plaquenil and z-pack that I was taking for bronchitis the lab results were close to normal. Lots of things were ruled out-yeah! The new rheumy tested me for celiac-which was negative-again yeah! She confirms the fatigue is sjogren's but doesn't believe the brain fog is. She wants me to see another neurologist. I can't see that it will do any good. I have had 3 MRIs of the brain over the past 6 months and have undergone several memory tests. No problems seen in the MRIs-yeah! Definite memory deficit noted.  The majority of MDs I have seen recently say the symptoms aren't bad enough to warrant a stronger med like steroids (I have osteoporosis too). The last rheumy said she would consider it in a very low dose form. I'm not sure whether it's a good idea or not. I don't need anyother problems. I just don't know where to go from here. I'm not sure that I've found the right rheumy with the knowledge base that I need for my problems. I am stuck in this dark whole and can't get out. I decided yesterday to try an over the counter treatment-turmeric. It's supposed to be an anti-inflammatory agent. Maybe it will help. Anyone out there tried this before? The side effects are supposed to be minimal so maybe it is a better starting point than jumping into a powerful med like steroids. I have also thought about taking ginkobiloba and/or coq10 suppliments. Anyone taking these before? Thanks for all your posts. It's helpful to know that others out there are dealing with the same things (and sad at the same time to know that so many people are suffering too)!

[coopwall]

Hello buttefly,

Are you taking SSRI's?

I'd like to give you my experience with Gingko Biloba.  It ended up giving me more fog and memory issues.  It can interfere with antidepressants which are SSRI's.  Either it interferes with their effectiveness or it can increase their effects and created Serotonin Storm or Syndrome.

Be careful.  ANd I do hope you find some relief.

Coopwall

[Chickpea]

Hi Butterfly

It sounds as though you've been struggling with all sorts of AIs for many years.  My heart goes out to you.  You'd be entitled to be depressed so maybe that's why your doctor thought you must be! 

Like you I've had lots of neuro and neuropsych tests and there's no sign of depression, but some brain fog.  As the others say, there's lots of discussion here about brain fog so it's certainly a SjS issue, even if that's just anecdotal evidence. 

Lots of us are on Plaquenil combined with a variety of doses of Prednisolone/Prednisone.  I'm surprised that your doctors aren't considering even a low dose to see you through this flare.  Are you on pain meds too?  Have your specialists ever discussed more 'aggressive' treatment with immunosuppressants?  A few of us here are on Imuran or CellCept.  If you'd like more information you could post a query, or message me and I can tell you more.

I'd be very cautious about self medicating with over the counter treatments of any kind.  Ask your doctor/pharmacist how they might interact with the Plaquenil and other meds to be really sure.

Take care - Chickpea

[KYMOM]

If they can't figure it out it has to be womans problems or depression.  Well yeah many of us are depressed!  But that is not causing all of our physical problems.  Are you still going to the old Rheumy?  Sounds like that was not the best doc patient relationship.  Roxanne

[Butterfly]

Hi Coopwall, I was on Celexa for what my old rheumy called "panic attacks" related to sleep (really the lack of it). I was working full time, on call 24/7 (I was a nurse manager of a very busy women's unit at a hospital in my area), and have 3 children (and of course my husband). I would become irritated when my routine wasn't the same at night. I just couldn't get enough sleep. I think it was the beginning of worsening fatigue. When things got worse and the fatigue became unbearable she increased the celexa. I was also taking ambien to help me sleep every night. She started me on provigil for the brain fog. I ended up in the emergency room with a severe allergic reaction to all 3. I was highly agitated/irritated and pretty much gorked out of my mind. Maybe I'll reconsider taking the ginkobiloba. I don't want to repeat the experience with celexa. Thanks for your input!!
Hi Chickpea, my 2nd rheumy would consider giving me a low dose steroid (when I asked about it). The 1st rheumy and the doctors that I saw at the mayo clinic said my symptoms weren't severe or systemic enough to warrant the use of steroids. I already have osteoporosis and don't need or want any other complications. I'm not sure whether I should try the steroids or not. It's all so confusing! No one has mentioned any other treatments. I get the feeling they don't believe me when I talk about the extreme fatigue and brain fog. I don't think I have found a doctor knowledgeable enough ( or willing to learn more) about sjogren's. I'm trying to learn more on my own (this site has already proven to be helpful). I don't take anything for pain (except the occasional Tylenol arthritis or flexeril). I tend to be very sensitive to medications-darvocet snows me and it's a very mild pain killer. The plaquenil has really helped with joint issues. I'm very thankful for that!! I will take your suggestion and run the over the counter meds I'm considering trying by my pharmacist to make sure they are ok. Thanks!!
Hi Kymom, It's pretty irritating when doctor's try to say we're experiencing some type of "women's" problems. The doctor's at the mayo clinic suggested my problems were hormonal. I was pretty irritated. I saw my obgyn anyway to cross that off the list-hormones were where they needed to be. She and I had a good laugh. I'm not seeing the old rheumy anymore. You're right-that relationship wasn't working. It started off well-but when I really needed her help (when things got worse) she wasn't listening to me or my mother. I had to start bringing someone with me to dr appts because I of my memory. I just wasn't a good historian-they would ask how has the past week or 2 been and I couldn't answer them. I just couldn't remember the important things that they needed to know. I'm not sure if I'm going to stay with the 2nd rheumy or keep looking.
I really appreciate all the information and understanding you all have provided. I'm so glad that I found this site!! Thanks!!!

[irish]

Butterfly, I have brain fog also. I have had it off and on for years and didn't know what it was because I had not been diagnosed. I have also been on antidepressants for years. When I finally got diagnosed with several of my AI diseases I was telling my immunologist about my depression and brain fog. He is known world wide in the medical community and told me "of course you have depression, you are sick and have been for years. It is well known that people with chronic illness suffer from depression at a much higher rate than people who don't have chronic disease.

I would be hard pressed to think that you do not have depression. Sleeping a lot can be a sign of depression as can sleeping too little. Have you ever been on an antidepressant? I know that if I skip my medication my brain doesn't function as well. The brain fog and depression is caused by the autoimmune inflammatory disease that attacks the brain. Also, as mentioned in an earlier post when my thyroid disease gets out of whack my brain goes south also.

I have always maintained (and still do to this day) that when our secreting glands are affected in Sjogrens the chemicals in the brain can decrease also. We need the antidepressants to replace and repair the chemicals and their receptors in the brain. Pardon me for being so hard core about this subject, but as a Registered Nurse I have worked with a lot of people that were depressed and the doctor was the last person to know. Many doctors don't understand depression and that includes some psychiatrists. I know, because I have gone to a couple of these ding-dongs.

The fact is that when we have depression taking an antidepressant can increase our energy level and increase the brains ability to cope and think. When we have depression we can also have anxiety and that can really trash our mental status. When we get our depression and anxiety under control many aspects of our life can improve, things that we didn't even realize were "broken". We may find that constipation or diarrhea will improve, appetite will become more normal, weight gain or loss may level off, irritability will leave, ability to concentrate improves, coping skills improve, sleep will become more normal (will sleep less or more and feel more rested), etc. Also, antidepressants work very well with the treatment of pain as the medication changes how the body perceives pain. The list of issues that a depressed person suffers from can be very long and varies from person to person.

None of us like to take medication, but when there are antidepressants out there and we are having issues that no one seems to resolve or even understand it may behoove us to try the antidepressants. Also, people who have never had depression or treated with antidepressants don't truly understand the total picture and this includes doctors. Remember that depression is not always the crying/blues thing. Depression is a medical illness caused by a specific problem that causes our body to almost vegetate. We lose so many of our body's skills due to the loss the the brains chemicals. Good luck and pardon my rant. Irish