So tired

[sam0511]

Does anyone else suffer extreme tiredness? Bit of a vicious circle really, I need to get my fitness levels up, but then it triggers a flare and I end up in bed, achy tired, falling asleep all the time. Any advice? Thanks

[billi]

This is a big thing for all of us. Not only does it affect our social lives but also work, care of home and children. 30 years ago bringing up my three children alone was very hard but I pushed myself to the limits as I had no other choice. My kids were great, very helpful and understanding. Looking back I see clearly that they were my inspiration throughout that time. Now I'm retired my children have their own families and it just me and my hubby I find it is even more difficult. I have other age related problems to deal with aswell as Behcets and I'm not as fit or quick as I used to be and it does feels like I'm on a climbing wall. Everything is an immense effort but at least I can rest or have a nap when I need to, I make good use of a slow cooker, dusting and cleaning just has to wait etc etc. All any of us can do is ......relax or sleep if we need to, housework, etc can wait another day or two. Don't try to do everything at once, a couple of jobs a day use technology and home delivery etc. Think of yourself at times, it's not selfish it's necessary . Hope this helps. Stay strong and positive but listen to your body, nobody knows it as you do.

Hugs

Billi

[sam0511 in reply to billi]

Thanks Billi, just feel a lazy devil. I used to be able to do all in one day, now I am lucky if I get one thing done. Just helps to know that others understand. My hubby brill thank goodness. Take care x

[Jaynep]

I feel the same. I thought once on meds I'd be able to go back in to work and socialise again. But tiredness I's the thing that gets me most with this disease,and it's not a normal tiredness either!when it comes on I just got to sleep there and then. I'm in bed by 7 every day and it makes me sad as I never have the energy to go anywhere or do anything with my partner 😟.

[belle623]

Hi Sam!

Don't give up! And totally undhow you feel. Start small, 10 min increments. Easy, don't spike your HR too much. Walk, yoga, pilates, walk your stairs( controled pace) checkout Barre3 online changed my life! So try a 10-20 workout before breakfast. This helps getting everything GI wose moving, helps joints and fight jointpain naturally. Not saying it is a cure, but it could get set up the day so to speak.

Hope this helps. Hope you find a rhythm soon that works for you.

[sam0511 in reply to belle623]

This makes sense...borrowed next doors elderly dog and walk 2 or 3 times a day for 10-15 mins. Suits us both! Just so tired at the moment. Hoping when the longer days arrive this may improve. Thanks

[mariarich41]

Me too, know the feeling very well . I get so annoyed feeling so tired all the time just seems you get nothing done and your days feel wasted. I guess we just have to do what we can on the not so tired days and rest when we need it. It is very frustrating though xx

[rooser1]

Sleep for the time being. Getting into the workout mode takes a VERY long time, for me, a few years. I still have setbacks from time to time.

Big thing that broke the cycle for me was changing my diet. It allowed me to start having more energy and then very slowly I was able to start working out.

BUT SLEEP FOR NOW- your body needs it.

[sam0511 in reply to rooser1]

What diet changes did you make?

[rooser1 in reply to sam0511]

Initially I went to a candida diet and then transitioned into an anti inflammatory diet. They share a key food: SUGAR. I felt a difference within 10 days. It was not easy. I was starving initially and felt like there was nothing to eat because I think on average, every person thinks "they dont eat that bad." Thing is, maybe you're not, but we are not the norm so- minor things throw us out the loop.

Both diets consist of: no sugar (anti inflam allows fruits but I wasnt risking it as I had candida) and basically no processed foods aka- nothing in boxes. So think: meats that you cook yourself, veggies(no starchy veg's...no carrots, no potatoes...beets (you can work those in a little bit later..etc) and good fats, like coconut and olive oils. Herbs will be your best friend. Rosemary, oregano, thyme, basil garlic etc. USE THEM.

I survived the first few days on pan cooked chicken, onions, and green peppers. Now im aware that all fish/shrimp is amazing and excellent for inflammation levels (omega 3's :). Broccoli, spinach and sauted mushrooms with garlic and lemon and butter. I never excluded butter. Its a very simple and unprocessed product that can literally make or break your meal, so I kept that. Roasted asparagus with garlic and lemon. Meats with rosemary and garlic. Trust me, youll feel amazing, youll be full and youll actually enjoy eating this way and wont go back to sweets and chips and soda (even if you arent eating them very much... i notice stiffness and joint and fatigue when i do eat them in the rarity. Nuts are great snack, so is good quality lunch meat (turkey) and some cheddar roll ups. The only fruit I allow in my diet is blueberries and strawberries and its usually coupled with nuts and in moderation. Yogurts are the devil- tons of sugar. But no more bread. No more pasta. Trust me, youll feel better. I honestly contribute the pinnacle of me "pulling out" of most BD symptoms bc of diet (and adding probiotics).

Its a gradual process, you will mess up. lol i have. and then you feel like shit and go back to eating clean again. Youll be more aware of your body's aches and be like- yep, ive eaten terribly lately... Im tired... etc. I made another post how i avoided a flare by recognizing my minor symptoms and cleaned the diet up extra hard that week. Blood work confirmed the c reactive protein for that week too. Avoided the dreadful genital ulcers. Inbox me if you want more recipes or more info.

PS: keep up on water! (no juices!!)

[sam0511 in reply to rooser1]

You're amazing. Thank you. I will give it a try. Have found that I feel better on a "cleaner" diet, don't do takeaways etc or ready meals. The sugar I have cut down on, but I will cut it out completely. Thanks again.

[rooser1 in reply to sam0511]

Yeah- it turned out for me that I am sucrose intolerant and what sucked was that the more and more I cut out- the better I felt, but then also the more sensitive to sugar I became. Kind of a positive, kind of a negative. We rarely eat out. If we do, it is limited to this one indian restaurant, authentic mediterranian (mmm hummus and lenthil beans...yes i eat the pita bc im so good other wise) and sushi- which is very fish oriented, no sauce, think nigiri and sashimi. other than that, NOPE. I used to be able to stomach more sugar, became more and more sensitive to it and have severe issues with it now.so I am 100% sugar free. This includes fake sugars. I dont supplement with fake. I just dont do it. This doesnt include honey by the way. Honey is excellent.

[sam0511 in reply to rooser1]

It sounds silly but having you confirm it will make it easier for me now. I use agave nectar...and I have just checked it is ok. No wine etc now. I am so sick of feeling tired and ill. I didn't drink a lot, just the occasional social one, but I am cutting all out for a bit. It will be interesting to see if I can tolerate any after a while, but it will be a small price to pay if I can't. Again thanks for your help.

[Jaxxi in reply to rooser1]

I have a lot more energy on a clean diet too. Mainly vegan with occasional fish; gluten and nightshade free. I steer clear of gluten free baked products in the main as most are based on denatured white starch.There are some great GF noodles and pastas around though, made from things like buckwheat, brown rice, mung beans and lentils. So my staple meal is a rich veggie stew with tofu, chickpeas, beans or and a scattering of toasted pumpkin, sunflower and sesame seeds or some nuts, served with brown rice or noodles and a salad. I try and include turmeric as much as possible.

Breakfast is usually green smoothie as I'm OK with fruit or a boiled egg with Rice cakes and yeast extract. It sounds dull, but there are lots of ways to vary these basics with different ingredients. And I do allow myself to fall off the waggon when I go out, and eat regular grub like everyone else.

I am doing reasonably well without any drugs at the moment.

[sam0511 in reply to Jaxxi]

Second day in and already I feel better. No bread at all. Also watching what fruit I eat. Cutting out sugar as much as I can. Also I have managed to get in plenty of walking. I have been told that Turmeric is a bit of a wonder spice, no wonder the shop had sold out! Well done being drug free. That isn't an option for me unfortunately, but there are some so much worse off, so I am not complaining. Thanks for your reply.

[Jaxxi in reply to sam0511]

When I went gluten free in 2000 the difference was immediate and I went into a remission which lasted until 2004!

Take care with the walking. I built up to several miles a day earlier this year but I was wearing unsuitable footwear and ended up with a bone spur in my ankle which fragmented, made walking v painful and had to be surgically removed today!!! Please wear proper walking shoes with good insoles xxx

[splush133]

Last year, out of nowhere, I suffered from extreme sleepiness and exhaustion. I'd sleep 9-12 hours a night and wake up tired (but was getting solid sleep - not restless at all). Was tired all day. Pretty much HAD to take a nap when I got home from work if I at all expected to be able to function in the evening to make dinner or socialize or be productive in any way. Almost fell asleep on the drive to work a few times after sleeping 10 hours. Bad stuff. Saw a bunch of different doctors, $1000s in tests, including a sleep study. Finally, without any medical evidence of anything wrong with me, my doctor decided to put me on Ritalin (apparently used to treat narcolepsy as well as ADD/ADHD) and holy cow - it works wonders. I'm not usually pro-medicine (especially when we don't actually know the cause), but honestly it was (and is) a life saver. My doc wasn't sure if my sleepiness was connected to my BD, so he sent me to a sleep specialist. I actually have an appt today with my doc so we'll see what he thinks...

Sorry - all of that to say: I feel your pain! If it continues (mine lasted about six months before the sleep specialist put me on meds), maybe consider trying out meds? Again, I'm not usually a pusher of a medicinal fix, but I was worried about losing my job because I had taken so many sick days just to stay home and sleep.

[sam0511 in reply to splush133]

Thanks for this, I will see how it goes. Felt ok today but again slept late which I don't like doing. Been for a gentle walk and kept busy all day, nothing too strenuous. See how it goes. Thanks.

[rooser1 in reply to splush133]

They put me on provigil bc they thought i had non rem narcolepsy, because I was fallign asleep THAT much. Driving... couldnt stay awake more than 2 hours at a time with a 20 min nap. Slept hard every night for 10-13 hours. First few days on that medicine was AMAZING- THE GRASS WAS GREENER- I WAS CLEAR. I wasnt in a daze, I could focus, I was AWAKE. Few weeks later, it threw me in the worst flare EVER in my life. We summed it up to- it gave me "energy" that my body just could not allot. So I like "maxed" out my reserves. Im meant to only do so much in a day. so be it.

[Linderella]

Yes, for sure. Do not allow yourself to get too tired or you will have a flare. Go to bed and rest when you are truly exhausted. Take fitness steps slowly and gradually increase your fitness level; walking is great!

[sam0511 in reply to Linderella]

Thank you...started walking, building gradually. It is ridiculous how tired I feel. After advice from another sufferer, have totally revamped my diet too. That wont be helping until I start to feel the benefits. Thanks for your reply,

[Chris1096]

I'm having the same problems it's probably worth getting checked out for sleep apnea as I was extremely tired before they diagnosed sleep apnea now I need to use a cpap machine to help me breathe at night they don't know if it's linked with behcets and suffer lots of medical problems it took nearly 8 years to get fully diagnosed with behcets but I also suffer lots of other problems that aren't supposed to be linked with behcets My worst thing is living with a catheter through my stomach into my bladder so now have a bag I've had this for the last 10 years plus and still no further forward to getting it fixed or cured I have to have a general anaesthetic every 8 weeks to have the catheter changed but normal people have this done at there doctors but due to pain in the bladder and penile pain this is very excruciating that's why they do general anaesthetic so I don't suffer the pain.

I'm just wondering if any other sufferers have got same problems or symptoms

I hope you can get some answers many thanks Chris

[sam0511 in reply to Chris1096]

You are really going through it. Sleep apnea I think is a separate condition. I know a few who I work with that suffer with it. I have just started to change my diet and exercise more, just walking, nothing else. Also no alcohol last thing, just a glass of water. Can't drink on meds I am on anyway. Its not easy when I feel so tired to start doing more. You want to do just the opposite. But just a week in and I do feel better. If you have a catheter, then that must be uncomfortable at times. Have you thought about a bed that adjusts, rather than lie flat? Feel a bit useless regarding advice really. Take care, and post how you get on x

[UKADMIN Partner Behcet's Syndrome Society]

Some fantastic tips here to help with fatigue. Thanks everyone.