How do you manage your fatigue?

Sorry to go on about 'the fog' - but I've managed the beast for over ten years now. I think that most of us who have any autoimmune disease learn to cope with it - but I'd like to hear how you guys deal with it x

[margaretjo]

.Great question ive been searching for the answer for years hopefully someone in this wonderful group will have some ideas. Thank.you for asking it

[tassie]

I actually felt a lot better when I went gluten free and started taking iron. I also take Plaquenil but although it helped the GF and iron seemed to help bring me out of the fog.

[MaryF Administrator]

I could not tolerate Plaquenil after a serious reaction to it, but my fatigue is more manageable on LDN. I have to pace myself, I have many people who depend on me, and also have to help run the family business. I stay positive at all times as all three of my children have fatigue, two severely so, so look to me as an example probably! I sometimes have to give up exercise, but as soon as I can I try and get started again. I find two sets of twenty minutes is what I can tolerate. Watching my children struggling to access school in terms of A Levels and GCSE's is not always easy when they are too unwell to be there, much laughter takes place in our house, we try to have uplifting activities going on, and have many good friends. Mary F

[Hidden in reply to MaryF]

Hi MaryF

Sorry to hear about the reaction from Plaquenil. x

[emmaj]

I think its probably the hardest bit to deal with, i agree that iron helps,floradix is a good one, and vit d helped for me, ive just been given the go ahead to try plaquenil, im hoping it works xx

[MaryF Administrator in reply to emmaj]

Yes the vit D levels are most important, and I am currently on iron, never been low in it before but recent tests showed that I was, also checked vit b levels, but they were ok, I think it is very important to regularly test these, my children are all tested regularly also. Regarding Plaquenil, although very very bad for me, my young daughter was started on this and has been much better so far with no problems. MaryF

[Lure2]

Warfarin was "a saver" in all.

I am not working anymore due to my age is over 67. A lie down on the bed at least 3 times a day (not so long and with the alarm on so I do not go to sleep ) If i need sleep only 20 min so I can sleep at night . Healthy food. Take the medicins in the right time.

Kerstin in Stockholm

[MaryF Administrator in reply to Lure2]

Yes I make sure during rest times that I do not sleep. However in the mornings I have three alarm clocks, all positioned so that I have to get out of bed! One under the bed goes off first, then ten minutes later another one outside the bedroom, followed by a third a bit further away. Otherwise I could snooze forever. MaryF

[Lure2 in reply to MaryF]

I am a happpy person because I can laugh at myself with this illness. I can now almost laugh at one more person with this illness. Bless you Mary! Kerstin

[MaryF Administrator in reply to Lure2]

Yes well I failed to mention the other alarm clocks which go off in the teenagers bedroom. The mornings in my house resemble some sort of zoological experiment! MaryF

[Hidden in reply to Lure2]

You may hate me from saying this. I'm almost sure you will..I had an in-law who was in his 80s and he was on Warfarin. He had to have an emergency heart operation a couple of years ago. Even though the operation was successful, he died later; he essentially bled to death all over, he bled everywhere. It was explained that he was on Warfarin and this could happen. x

[Lure2 in reply to Hidden]

Hi Omega,

That sounds bad. The medicals must have done something wrong. When you hear something like that you can be afraid of trying warfarin. I have leftsided distolic dysfunction

and leaking walves and I am on warfarin for life.

Things like that makes warfarin to have its bad reputation. Gina has mentioned many times earlier "killer coumadin". It IS a dangerous drug but life is dangerous. If you have really good doctors and also a selftesting machine I would say you can feel rather safe.

20 years ago I swallowed a piece of carrot and could not breathe. It got stuck in my throut. My husband saved my life in front of our children be giving me a push on my back and the carrot landed on the table.

When you notice how much better you feel on this drug you do not hesitate. Life has its up and downs and it is a trial and error.

The thing that happened with your relative is not a thing that happens every day. It was a terrible misstake. I am so sorry. I guess that you are not on warfarin as an anticoagulant.

I could never hate you for what you have written about your experience. It was very good that you told us this. It is therefor we are here for eachother. A lot of people are afraid of warfarin and many doctors also.

Best wishes to you from Stockholm and Kerstin

[Hidden in reply to Lure2]

" could never hate you for what you have written about your experience. It was very good that you told us this. It is therefor we are here for each other. A lot of people are afraid of warfarin and many doctors also."

Hi Kerstin xx

Thank you for being so incredibly sweet and intelligent.

As it was not a pleasant experience, I did hesitate to mention this before particularly, knowing how many people depend on Warfarin and how often it is used and benefits etc. It seemed so unkind to even mention this, previously. There was no negligence or "medical accident" involved in his case. He was well looked after at a well reputed hospital and he was elderly and things tend to go wrong at once.

x x x

[Lure2 in reply to Hidden]

Hi Omega again,

I understand that. Perhaps he did not have APS.

My mother had an INR at 7,5 when she later on died. They can not control old peoples warfarin in hospital so well and sometimes when they are very old and very ill you can get the impression that they do not even care. Both my parents have died the last 10 years.

As to our illness APS it is known that there is a greater risk to have a stroke or PE or DVT that having a bleed.

Thank you for calling me sweet and intellligent. I am not sure of that myself.

Hope you have a good anticoagulation drug that works for you.

Kerstin

[Hidden in reply to Lure2]

Hi Kerstin

I totally hear you. As in everything, there is always a trade off in everything. Drugs do have side effects (not just Warfarin) and there's nothing in life which wouldn't carry any risks including food we eat and air we breathe and relationships we have etc. If the benefit is simply so overwhelming and it is clear that you gain A LOT more from the drug then you make your own educated and informed decision at the end of the day. When you have APS and if you are not on appropriate anti-coagulant, then it is simply suicidal / self-negligence.

INR 7.5 sounds seriously dreadful. I'm so sorry to hear that. No one deserves to suffer like that in old age if I'm honest..Thank you for your lovely thoughts as always..sending my friendly vibe from Northern England x x x

[Lure2 in reply to Hidden]

Hi Omega,

But it is difficult to get an anticoagulation-drug. First

A. An APS-doctor (that "gets" what you try to learn him/her).

B. A Diagnose (antibodies or APS-symtoms)

But to achieve it you must usually fight hard to finally get the right anticoagulation and be "safe" and feel better

Thank you for your answer and concern! Kerstin

[Hidden in reply to Lure2]

Hi Kerstin

Hope your weekend has been lovely.

So it seems...Surely, doctors ought to check INR rather than ignoring her /his symptoms? Take care x x

[Leenalina]

Good question. I use also LDN, which has helped me a lot. Another idea is to drink salt water. I add one teaspoon of salt to one litre of water. Salt helps water to absorb to tissue better. That is what my CFS doctor recommends. It adds blood volyme and through it helps blood to bring nutritions to brain. It helps me to function better. Only always forget to drink it...

[GinaD]

Most of my fatigue and fog went away when I went gluten free. My Mom improved (temporarily) when her GP ran blood tests and found her to be Vitamin B deficient. For many years she had a shot of Vitamin B twice a year. It seemed to help dissapate her brain fog, at least for a while.

I recently gave in to a friend's nagging and read "Grain Brain" by Dr. Perlmutter. It may be a fad, (though he references a lot of studies and research,) but his carbohydrates =s inflammation argument is compelling. I'm giving his diet a modified try.

[GinaD]

And as for managing my fatigue? Well, back when it was life-consuming I didn't really manage it. 12 hours of zombie sleep a night and 2 hour long naps a day. I learned to make lists as my memory was worthless. I was/am fortunate enough (or not) to not work full time so I constructed a schedule for housework that divided up duties by days. Each day's duties only comprised a few lines on a list of daily "dos" but even so it was the rare day I checked everything off. Driving could be scary as I feared I would nod off on just a 20 minutes drive. I stocked my car with the strongest altoids I could find, and would put 4 - 6 in my mouth at once as the strong taste kept me more alert. So -- I tried to cope with the fatigue, but I never really got there -- until diet changes finally drove the fatigue away.

[MaryF Administrator in reply to GinaD]

I noticed the edge came off some of my fatigue going gluten free, which I did prior to the LDN! I would not go back on it for anything, even though I do at times glare at other people's croissants! MaryF

[Holley in reply to MaryF]

What is LDN?

[MaryF Administrator in reply to Holley]

Low Dose Naltrexone. MaryF

[Hidden in reply to GinaD]

I know what you mean, Gina. Food does affect our sleep. Sounds like you have made a radical change and you gained so much. Good for you! x x x

[Hidden]

Good for you Dave. I admire people who manage to sustain his life and marriage / family life, which I could not do. x

[Lure2]

Hi Dave,

You are so right and you have learnt to pace yourself. A believe that APS starts very often with an accident or special event or operation. I left my husband (after 22 years of marriage) before the "outbreak" of APS and I know that the things that happed then was the "trigger".

Yes I have found Sticky Blood Explained very helpful. Very good that your wife has read a little in it. It makes her understand better.

I also take vit D. Enjoy the nature. It is almost like summer here in Stockholm today. So Beautiful.

Best wishes to you and your wife from Kerstin

[Hidden in reply to Lure2]

"You are so right and you have learnt to pace yourself. A believe that APS starts very often with an accident or special event or operation. I left my husband (after 22 years of marriage) before the "outbreak" of APS and I know that the things that happed then was the "trigger"."

Hi 22 years..that is a long, long time. (But I also know time can fly by in my own experience) It must have been a difficult time for you. Ending such a long marriage must have been so hard, I can imagine. We ought to have a thread on relationship issues. Hope you've recovered from the trauma & life is good. x

[Andrewl]

Hi, I have never really actually thought about how I manage fatigue. I know my limits and just push the boundary a little with work. I am now on vit D tabs to and I think it helps. I do find once worked I can't have leisure time, as the body won't let me. This does annoy me, very frustrating. A difficult and interesting question.

[Hidden]

I think that fatigue is a major issue as it is so life-limiting affecting relationships, work etc.. I'd very much like to find out exactly how this fatigue occurs in autoimmune conditions / people who have high antibodies.

[panda60]

In a nutshell I don't! I have suffered from fatigue for as long as I can remember but since I was diagnosed with fibro alongside the Hughes two years ago I spend most of my life fighting the urge to lie down and sleep.

All I can do is try to pace myself as much as I can. My husband does most things around the house but I do what I can when I can. My bedroom needs tidying and cleaning, both of which I intended to do this morning, but the cleaning bit will have to wait till later. I get so frustrated as the fatigue has taken over my life but am trying to look positively at what I can do. Audio books are my lifesaver as I can sit and listen to them if I feel too tired to read.

I try to get up,at 8.00 each day and am in bed by 9.30 most nights and have a sleep for an hour or so in the afternoon . Days out and holidays are the most difficult to deal with because I end up doing too much. Would be interested to know how others cope with holidays.