Suffering with a.p.s. and crying with exhaustion.

[top_hole]

i have a.p.s. and several other related health problems, but briefly can any one please tell me if they cry with exhaustion, and am i lacking something in my diet that could cause this?

thank you, top_hole.

[CanaryDiamond10]

No, you are probably not lacking anything at all. The last time I remember crying for no apparent and every apparent reason was with menopause (hormonal?). Otherwise, my eyes water with humdinger headaches, but no boo-hoo, woe is me, crying. They just water from pain and probably a natural response to dryness. I do get overwhelmingly exhausted. It comes on so fast, I am lucky to sit PRONTO wherever and whatever I am doing. (not always convenient) Since I never know when it's coming, I avoid driving as much as possible. It happens if I feel good, it happens when I feel bad. It just happens. There are quite a few APS patients whom have had their trials and tribulations with exhaustion on this site. You can try to work around it with common sence planning. Don't set your goals higher than what is achievable or expected FOR YOU (every case is different) because you simply set yourself up for failure and that in itself can make people cry. The bigest thing to remember when you are down mentally is FORGIVE YOURSELF and move on. Don't dwell on the bad stuff. It's just not practical. Before you know it some other bad thing will come along and top it. Don't dwell on that either. Learn what you can and move on! If I remember right, you are fairly newly diagnosed and it will take you, your body and soul a while to harmonize with this new, lifelong occupant. It's somewhat like moving over for an evil step sister. You know she's evil, but you can't choose your family. It's the lot you drew. So avoid what you know exhausts you (mentally, physically or spiritually) and indulge in the things that please you. Learn what you can, but don't forget to step away from it all every once in a while, because too much information can overload. Don't ever let a "well" day pass by without utilizing it to the fullest. Even if it's only for a long private walk.

One saving grace is you are not alone. This is a very supportive and helpful site. It has proved a blessing to me quite a few times, even if it's to "kick myself in the pants" for some simple thing I should have thought of that was casually mentioned here. It's a very informative site. There are just plain "good people" on this site whom have to other motive than to help you through TODAY. No matter what your situation.

I send you smiles, hugs and prayers for a better day tomorrow. And tomorrow I will send you more! You will adjust to this. It just takes time, patience, knowlege, prayers and help. I hope this helps.

Canary

[Wittycjt in reply to CanaryDiamond10]

Such a well said response. This is so very true of those on here🌼

[CanaryDiamond10]

Sorry for the typo, that should be NO other motive than to help you through TODAY.

Please excuse!

[Hidden]

Are you exercising, such as going for walks? Are you keeping yor mind active. Keeping busy and moving helps a great deal, Are you depressed? This can cause extreme fatigue. Are you taking any meds?

[top_hole in reply to Hidden]

thankyou for your help, yes I do get exercise, and as my balance is not good since the last minnie stroke (walking), so I recently bought a bike, and in trying to learn to balance on it again, I fell off (in the driveway), and hit my head on the wall, hurt my knee, and my right wrist which involved a trot up to the hospital, and was unable to write or cut things , until it settled down._____but it took my mind off being depressed for a couple of days, so I,m doing my best to cope.But many thanks again. top_hole.

[GinaD]

I know all too well what I call " bone deep fatigue.". It's usually, but not always, associated with a dip in my INR, but often the underlying inflammation which also flares the APS is a never - known condition. One day you feel great, the next you need to give yourself a motivational speech to get up and fetch yourself a drink of water!

Eat well, ( lots of veggies,) exercise, try and maintain a semi-regular sleep cycle, ( which can be challenging when you find you are napping twice a day.) and become obsessive about hand washing. But no, it's not just you. Not just here, but on any autoimmune web site you will see that the bone deep fatigue is a recurring theme. When our immune systems turn themselves on, they seem to commandeer all the energy in the body, leaving us, the conscious minders, with nothing to spare.

[Gadgets]

Hi Are you taking Plaquenil? That is what many of us in UK take for the fatigue and joint bone pain. Its an anti malarial tablet.

Keep busy, keep mind active, start a hobby, do crosswords, jigsaws, research your familiy tree.... Go for walks, get a dog. anything to keep you busy.

I personally avoid vitamin K (dark greens) due to warfarin reacting to it but eat lots fresh fruit and veg

I find this all helps plus I work full time in my own business that I started since APS.

Pace yourself.

Good luck

Garry

[top_hole]

Thanyou for your help,you see as I mentioned , I do have other problems health wise , some of which the doctors are trying to sort out, but also I had depression and anxiety,( which people unless they know you well, don,t want to hear about, so now I,m learning after 3 years to keep it to myself. I,m coping but some days are still bad and then is when I cry,(on my own}. the doctors gave me citalo pram, but that upset my sodium levels so they took me off it and I just have to manage, but for myself , I really think it would help if I could talk to someone . But just on this one point , I wondered if my diet(which is well balanced ) might be lacking something, but maybe not, as no one else has found this , and so many kind people have replied for which I,m most grateful. I guess I,ll just have to keep waiting , it IS better than it was. Explaining what caused it and the rest , would take too long, but it,s nice to know you are all there for support. thanks top_hole.

[jean48]

Gosh me too! I hate the exhaustion.

Jean

[clumsy3]

I vomit when exhausted, and everyone at work keeps asking are you pregnant,

[MaryF Administrator]

Hi there, sorry you are having a tough time, I truly understand. I do try and exercise and my diet is good...and I have five conditions in total. Including hypothryoidism which can make things even worse. Some find that plaquenil takes the edge off fatigue, but not a drug which suits me. I find that fresh air, a good attention to healthy foods and exercise, plus laughter all helps me obtain the best results, however I am on no complicated medication so I can perhaps eat and drink things that other can't. Sometime being able to talk to people who understand, ie on here, I think can greatly help. You may find some have a very similar medical profile! All the best Mary F x

[hasmoxie2]

YES! You are not alone!!!! My family tells me I need to get out - join a club - go to the gym - meet people - volunteer! I want to just sleep...sleep...sleep!!!! I wake up tired!! I have to nap now!! I'm in my early 50s and I nap!! Sometimes twice a day!!! Honey you are not alone!!! I was DXd in 2001 and I just get tireder - if that is even a word!!!

B-12 pills help - not the injections - the liquid that the B-12 is in isn't good for those with weakened immune systems - just makes our bodies work harder to get the toxins out, and they are already working hard with our immune system already. ASTAXANTHIN as I have mentioned a few times has REALLY helped. It's like a powerful fish oil but from ALGAE. Helps our EYES, our JOINTS, our HEARTS, gives ENERGY and is a powerful ANTIOXIDANT.

I take 5 of the 4mg once a day. If I take more I find I can't sleep! You don't need a RX for it, can buy it @ store or on-line.

debi in FL w APS

[Allyson]

Hi

I was diagnosed with aps after about 10 years of lots of symptoms, back in 2006.

One of my main problems is extreme fatigue and I have recently found out i am deficient in vitamin d. I have symptoms ( and have had for past god knows how many years) of osteomylacia which includes fatigue. I have spent the past years struggling to wake and then struggling to stay awake. I am crabby and very tearful with it as I am totally bone weary. Everything is an effort and it's a dream wen I get an odd day feeling more myself!

However!!! I am now on low dose steroids daily and adcal for the vitamin d and I am more able to walk and stay awake now than I have for years. I had a very high dose vit d for a week and it's now normal range. I have continuous grinding hip pain which I believe is due to this too. That has also improved too. Phew!

Sorry about the long post but sending you a big hug cos I know how utterly crappy you feel

Love and best wishes

Ally x

[top_hole]

thankyou for writing to me.I don,t understand much about the internet, my son or my husband help me with it. I,ve had a few t.i.a.s which was among several things that put me in to deep depression in 2009, and slowly I,m getting over it, but on the bad days I am just exhausted and so tearful. thanks for suggesting about the medicine , I,ll ask the dr. if it will be o.k. with my other tablets. I,ve been down the road of taking citalopram, prescribed for the depression, but it sent my sodium levels haywire. Like you I nap in the afternoon ,and then regret it as I can,t sleep without some sleeping tablet at night!!I,ll be 70 next month.

Depression wise , the g.p.s aren,t much help.what caused all this last problem I just so wish I couldput right, but I can,t, and that makes me cry.Anyway, I hope you will find something to make life easier for you, and again, thankyou.top_hole

[jessielou]

Hi hon

Welcome and glad you found us, I think lots of us understand about the total exhaustion, and could cry with it so you are definitely not alone hon.

I take plaquenil too and it does seem to help, pulling to stay out of the depression we feel at times is hard, but we just have to keep going, not letting this condition get the better of me.

Keep smiling, try and get out, even gentle walks help.

We're here and will help if we can

Awake at 0530am, after pain in leg woke me, I hate not being able to sleep, it's a lonely time.

Take care gentle hugs love Sheena xxxxx

[jessielou]

Hi the above four comments have been deleted because they were copies of my comment above. Either silly me or silly ipad playing up.

Hugs sheena xxxxx

[Hidden]

My "flareups" are getting less frequent since changing my lifestyle and reducing stress...but when I "flare" I feel so weak I can hardly walk....and then it 'lifts'( less than 48 hrs) and I feel fine....very strange.....when I feel weak I don't want to eat...but I find if I drink lots of orange juice it reduces the duration