no energy and no matter how long i sleep for i am still tired!!!

hi all i have another question regarding fatigue and as mentioned in the question no matter how much sleep i get i still wake up tired this is a new one on me as i am well used to the BD fatigue.i have been back to the doc and been to see the rheumy, one reckons its the BD and the rheumy thinks it could be sleep apnea (sorry for the spelling).all the meds i am on for BD should have me awake night and day but instead all i want to do is sleep this is only new as its the first time this has happened.the doc has given me ampitryptiline for 7 days one at night to send me into a deeper sleep,any ideas as to whats causing this would be appreciated

regards chris

7 Replies

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  • Hello Chris,

    Sorry I don't really have any ideas as to what it could be from-- I also am suffering from this problem. I am still searching for that answer myself. I always have fatigue and even on better days, I must be careful and remember to take it easy because my energy gets gobbled up very quickly, and as you mentioned, rest and sleep never seems to help improve it. Sometimes I can actually wake up feeling even more exhausted. What I really hate is when these attacks of extra fatigue and sheer exhaustion take over my entire body-- they can come on so suddenly and last for weeks at a time or only days-- I describe this overwhelming exhaustion is like a cement wall is closing in on me and I have no strength to push it away. The more I fight it, the more closed in I get. I have always just assumed that this is normal for many systemic autoimmune diseases, and is a sign of increased disease activity-- don't forget that our immune systems are constantly overworked and busy attacking our own bodies-- so I would think that its only normal for our bodies to be fatigued and exhausted from this.

    But there could be a number of other things that increase fatigue or can cause low-energy-- blood cell counts are probably at the top of the list (especially RBC's-- anemia is a common condition caused by autoimmunity) and then many meds that are commonly taken for Behcet;s symptoms can cause this as well (pain meds, anti-depressants, anti-anxiety meds, and so on).

    I wish I could be of more help. It's too bad we don't have magic wands that can just lift away all our Behcet's fatigue :( that would be a dream come true, wouldn't it?

    -Jenna

  • I have a form of sleep apnea which I have to use a CPAP machine at night. I have weak breathing muscles and so my throat closes down when laying down and/or sleeping.

    This affects the quality of sleep and causes sleep deprivation.

    If I take anything to help me sleep it actually makes it worse as the tablets actually affect the level of sleep, contrary to what is thought...... So even if you are sleeping you could in fact be stirring hundreds of times and never going into a deep sleep.

    I had become so bad I was literally punch drunk and couldn't function at all. I am better with the CPAP machine but as jenna says Behcets gives you cronic fatigue anyway.

    I had sleep tests at a sleep clinic and they witness me stopping breathing and also oxygen reductions.

    Have they got a local sleep clinic near you as it may be worth your Rheumatologist referring you to one. Sometimes the tests can be done from home.

    There are some past posts about sleep and fatigue that may be useful. If you put the words in the search bar above on the right hand side, it will bring up some past postings.

    good luck

    Andrea

  • Hi Scuffy (love the name).

    If you join the UK BD society they send you a card to carry in your wallet which I have found invaluable (particularly on hospital admissions). Basically it says "this is a person with BD and here are some of the symptoms .." One of them is overwhelming fatigue (I have read elsewhere that another autoimmune disease with overwhelming fatigue is multiple sclerosis and they liken the two fatigues to each other) - hope that made sense.

    Anyway - I was relieved to find a reason for my extreme tiredness and now find ways to work around it.

    Hope that helps

    Cheers

    Lesley

  • I had this problem which was only getting ever more increasingly severe the past 6 months (but bad for 18+ mos). I could barely wake up or get out of bed some days. Nothing helped. No amount of sleep, rest, coffee, food, exercise, anti-depressants...nothing. Many of my doctors and friends were quick to assume it was just the Behcets or meds (incl recently started Remicade). Luckily, my primary doctor trusted me and listened to me and knew me well enough to run extra tests when I suspected more might be going on. I was diagnosed one month ago with Adrenal Insufficiency (Secondary, due to Pituitary - likely isolated ACTH deficiency with Autoimmune dysfunction as the cause). Since they have found the cause of my fatigue and I have been able to start treatment, it is like a miracle (compared to how I lived for over a year & a half). Yes, I still have Behcet's. I still hurt, get mouth sores, sweats, etc...life is not perfect; & now I will have to take steroids for life to replace my basic adrenal function. But at least I feel alive once again to deal with it all. I can't even begin to describe how dramatic the difference is. I am so glad I didn't listen to the people who tried to discourage me from looking further when I knew more was going on. It's not checked routinely because AI is relatively rare, but so is Behcets. If you haven't had it checked already, & you are experiencing other symptoms of adrenal insufficiency, you might consider asking your doctor about checking a fasting A.M. cortisol, so at least you can rule it out.

  • Hello Goodmom,

    I also suffer adrenal insufficiency due to autoimmune attack to my adrenal glands (Addison's Disease)-- this really adds a whole other problem for the body that is also being attacked by the nasty Behcet's Disease.

    I have a major problem with keeping my cortisol levels within an ok range-- my endocrinologist has no idea why my body is the way it is, and also cannot believe sometimes that I am still alive because often my cortisol will still drop to undetectable levels.

    I have been diagnosed with it for four years now, and the Behcet's diagnosis came just about two years ago. So you would think that with me being on steroid replacement now for a long time that things would of settled. I have to take the high end amount of replacement (in the form of Prednisone) every morning plus extra throughout the day just to keep me awake-- but no amount of extra steroid really helps with the sheer exhaustion. And even after taking higher doses of steroid, my cortisol level can still be extremely low.

    The other problem is that I cannot use steroids to help with the Behcet's because my body just gobbles it up as cortisol-- even when I have had high-dose steroid infsuions/injections through I.V. it still does nothing to help settle down the swelling and/or pain. It merely just "wakes" me up a bit for an hour or two until I zonck out again.

    I still often wonder if there is something else going on, but my specialists just kind of shrug their shoulders at me and say "Hmm.. I just don't understand your body" with a giggle. They have made me feel like I'm just a walking medical mystery, and most specialists won't bother seeing me because of this-- they don't want to take the time to help figure things out and ultimately help me.

    Back when I was 17-18, I suffered an autoimmune attack to my pituitary gland (my endo calls it "Hypophysitis"), which is beyond rare, and it shrivelled my gland up and because it's so small it sits outside its normal location (called "empty-sila" syndrome)-- but all my tests show that it is fully functioning and produces all the right amount of hormones still (except I have high prolactin levels all the time-- another mystery).

    Just curious-- you mentioned your adrenal insufficiency occurred because of autoimmune attack to your pituitary and you suffer low ACTH levels now-- I wonder if it was also Hypophysitis? Just got me thinking.

    I find it kind of neat that there is someone else with both adrenal insufficiency and Behcet's-- because as you mentioned, both are extremely rare-- but my doctors have also told me that its unheard of in the medical literature to have both diseases at the same time. But, I also feel for you because it isn't easy living with both conditions.

    Take care :)

    -Jenna

  • hello all thanks so much for the replys and advice my doc mentioned addisons disease before so i am going down that road with him starting on monday and i will also get him to check for AI i genuinely thought i was going to nod off to sleep at the docs yesterday it was a battle royale to stay awake.i will deffo join the UK BD society thanks for the info lesley it will be a very useful card and save a lot of time.in answer to your question andrea there is a sleep clinic nearby and i will chase the rheumy down regarding that.thanks for the advice jenna i am sorry to hear of your plight in regard to having to deal with two chronic conditions but i admire your insight into both conditions as you are all helping others with your collective knowledge you guys have no idea what it means to communicate with people who understand the beast that is bechets.also to goodmom good to see you had a positive outcome and it just goes to show that the patient knows best and the value of finding a doctor who actually listens is unquantifyable because in the end they are the people whom we all have to put our faith in thanks again for the advice and roll on monday when i get to bring my own super doctor up to speed regarding all this information and to all who are suffering keep fighting and never give up

    regards and good health Chris

  • Thank you for your positive and encouraging words, Chris. Keep me posted what happens.

    (My name is Lisa, by the way.:-)) My life improvement since they realized my severe fatigue was not just due to and another one Behcet's amorphous, catch-all symptoms (which may or may not improve with Remicade, etc...), has been nothing short of miraculous. I went from totally disabled to registering for a couple computer science classes for spring quarter and finally finishing and launching a website I had been unable to complete for the 6 mos prior - in less than a month - once the adrenal unsufficiency started being treated, too. (*I'm still cautious about the sudden, dramatic increase in activity level, as I tend to overdo when I feel better and then crash from overdoing it for my body/health, but hopefully I have learned from my past and truly will stay doing better now.) Unfortunately, I actually have hit a little snag the past few days. My new endocrinologist wanted to switch my steroid medication (to hyrdrocortisone which is supposed to be more natural and better for the body than alternatives), & has changed the dosing schedule and amount, and I am not tolerating it well. I am sure it will get sorted out, but the timing has got me down (right in the middle of multiple non-flexible deadlines of my 1st attempt to return to school & work in 5 years). Starting to seriously wonder if I am kidding myself that I can return to a professional life of any kind with these co-occurring conditions. But I loved what Chris said about "never give up", & I am not giving up. I am smart, determined, well-educated - & although I have very little family support of any kind, I do have excellent doctors who listen, reasonable health insurance, & fair enough disability pay to have allowed me time to work all this out & care for my children. That is a lot!

    Also, to follow up Q's/comments by Jenna - I have not heard mention of Hypophysitis in my case. To my understanding, there may have been some type of autoimmune attack to my Pituitary. All hormone level indicators point to my pituitary as the source of my body's failure to produce cortisol. They determined I do not have Addison's (primary adrenal insufficiency) because while my cortisol is always low to nearly immeasurable, the one ACTH stim test they did, my cortisol levels did manage to double from a low baseline though they never got above 12 (min standard for adrenal sufficiency in test is at least 20). I guess this combined with the fact that my ACTH levels themselves are so low they are nearly immeasurable tells them that the problem is coming from the pituitary, not the adrenals. However, imaging of my pituitary shows a normal sized gland, "with no large growths" according to my Endo. Ironically, I have been tested for pituitary tumors at least 5 times even prior to the recent adrenal insufficiency diagnosis, due to the fact that I have continued to lactate 6 years past cessation of breastfeeding my youngest; but prolactin levels, imaging, everything have always been normal. Clearly something is screwy there, the available tests are just not refined enough to pinpoint it yet. In any case, the new Endo says it is likely "isolated ACTH deficiency" due to autoimmune causes, secondary/pituitary origin. Most likely permanent, not likely to need surgery for (which I'm a little relieved about).

    FYI: Medline or PubMed does have a couple of recent reported cases of patients with Behcets and Adrenal Insufficiency. They are definitely still both rare conditions, but the co-occurrence is not unheard of. One was from Turkey & the other another Silk Route country I can't recall at the moment.

    For my part re: etiology & causation also, due to my longstanding problems also with thyroid & gastric mucosal atrophy, I believe they are classifying the occurrence of the AI in me as fitting in some type of polyendocrine autoimmune subset that is less uncommon (lets them neatly check all their diagnostic checkboxes as to how/why this is possible to occur together)

    I am very excited to know & communicate with another (& others?) Going through the same thing, as I feel so alone and unusual (& the drudgery of trying to get the right treatment!) in dealing with all this sometimes.

    Thank you for being there.

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