Hi all I'm still feeling washed out a... - Hughes Syndrome A...

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Hi all I'm still feeling washed out and fatigued....

popshaw21 profile image
13 Replies

This has gone on now for nearly 2 weeks which is unusual for me,normally it may go on for a few days but never this long.

I know my INR is erratic and can be either too thick or too thin,my INR is set at between 3-4 and my last few results have been at 1:6 then jumped up to 5:1...I know diet can affect my INR but im very sensible with my diet and my weight is right for my height.I can't think of anything else that can affect my INR i don't drink and i limit my intake on green leaf vegetable.

Does anyone know what else could be effecting my INR?I know when my INR is out of range

I exsperience fatigue and tiredness,so im wondering if there is something else effecting my INR?or are there any natural herbs out there which could help with this dreaded fatigue?

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popshaw21 profile image
popshaw21
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13 Replies
Davidj profile image
Davidj

Hi - stories so familiar , I didn't know peanuts were high in vitemen k. As I'm having chest pain , under ribs I'm thinking its gas. So I stayed awake all night eating m&ms. Needless to say that thickens the blood. My point after that, I looked on the Internet for "foods that will affect coumiden ) for a whole list of things I didn't know. Green tea, garlic ect . Was also able to find at list of things that affect pt/INR . My hemo says the key to balencing INR is consistency . Salad every other day or a green veg every other day. I will say for me I can't go near aspetagus ! That throughs everything out of wack. Since I have lupus as well, it hard to exercise. But exercise consistency helps too. I saw all this , an strict with diet, and yet am nursing a blood clot in my right leg. It's been almost a year since my last clot . So I completely understand your frustration. Everything you read to stay health is eat fruits vegetable and nuts . All the things we can have. Hope at least some of this helps

Davidj

Tampa Florida mentgetlupustoo.healthunloc... ( for women too )

Jillymo profile image
Jillymo

Hi Popshaw,

So sorry to hear your having such a rough time i do hope it passes soon.

The lethargy & muddled head are the worst for me you are just not able to function,

David is right it is 'very' frustrating.

Go careful with natural remedies but do search the net with regards diet & INR you might find something that guides you to recovery.

I am not to good myself at the moment so booked a double appointment with my Gp, it was a waste of time i have no need to say more......I came out so damned deflated :)

Take good care of yourself. Jillymo x

popshaw21 profile image
popshaw21 in reply to Jillymo

Hi jillymo,I saw my rheumatoligist yesterday and he was concerned with some of my recent blood tests which could exsplain why ive been feeling so washed out and fatiqued.He has increased my immunosuppresent which may help but will take sometime to kick in.

otherwise theres nothing else he can offer me to help with this horrible fatique.I hope things will improve for you,and if i was you i would either get back to your doctor demanding action in combating the lethargy you are feeling,or demanding to get to see a rheumatologist who would maybe help you get the treatment you need.I do hope things improve for you soon.

Take good care and best wishes

popshaw21

Jillymo profile image
Jillymo in reply to popshaw21

Hi Popshaw. I am awaiting to see a Rheumy in Oxford but i have not heard anything as yet with regard to an appointment.

The lethargy is crippling the slightest thing & i'm flat on my back.

Like the admins i also feel the weather does not help.....with my condition i need the sun but i cant tolerate the heat ! ( Hypoparathyroidism )

I am worried about my feet & ankles.....the numbness & change in colour.

Ive got to wait to see this Rheumy ( not the first i have seen ) the Doctor was a waste of time.

This Rheumy is a specialist in Lupus...so i am told. I am praying he can shed some light on what is happening to me....this is so awfull to have to live with.

I hope your new med kicks in soon & you get some releif I dont think dynamite would shift me at the mo.

My bladder is leaking ! I am sure it is due to the weak muscles. I tied to talk to the doctor about this problem.....but no ! I have got to make another appointment to discuss that.

If only he knew how hard it is for me to get to the surgery these days.....he might pull all stops out to help me.

Be careful & dont run before you can walk.....remember to pace yourself it is so easy to over do it.......Ops ive passed wind that has set me back a couple of months :) All jokes aside it is no laughing matter:( xx.

popshaw21 profile image
popshaw21 in reply to Jillymo

Hi jillymo,if i was you i would chase up your appointment with the rheumatologist,Ring them and be a nuisance untill you get an answer don't let them fob you off,keep insisting you need to see an exspert who knows all about lupus as you are desperate for some treatment to ease your suffering.

You could also ask your doctor to refer you to "The royal hospital for rheumatic diseases"in the city of bath.I have been there for many years and it was them who found i had "Hughes syndrome"and they also treat people with Lupus.

Ive had a better day today and i sat outside enjoying the sunshine,I live in a quite area and its very peaceful too.I even managed to fix the bird table and i can see through my patio doors all the little birds come and go,in the summer i love to listen to the bird song as the sun sets.

I appreciate the things we get for free which feeds my spirit,like watching the sunset,or a starie night..Spending time with my son and grandson is very precious to me.

Hey its a perfectly normal pheuomena to let one go now and then,as long as you don't follow through!!...its happened to me a few times and your right thats no so funny.

well good luck with getting your chance to speak to a rheumatologist

Remember to keep on at them until you get what you need.

best wishes

popshaw

Jillymo profile image
Jillymo in reply to popshaw21

Hi Popshaw glad to hear your feeling better but take it steady.

Where i live is also very peaceful we also have lots of birds including pigeons & seagulls.....have you got loads of starlings ? Wow what a sight to watch as they make there patern in the sky.

It was freezing on friday but i just had to go out to watch the hundreds of birds flying overhead.

I was sent to the RNH in Bath for fibro myalgia i was seen by a lovely young lass (Gemma Strictland) who passed my records to a Prof Neil McHugh.

He took an interest in my case & wondered if i had Di-George !

The trouble was nobody would fund my transport to get back to see him...I was so upset at the time & to ill to get there under my own steam.

I could not understand why i couldn't get transport I had it so many times before when i used to go to the eye hospital in Bath. I really felt this guy could have helped me he seemed more on the ball if you know what i mean.

My consultant in Oxford is more to do with the blood work but he forgets we have symptoms that need yto be dealt with.

It was after giving him a wake up call that he has now refered me to a Rheumy but it is all so long winded.

Lets be fare we are not talking of a boil on the bum we are talking of serious health issues here.

Is that your little dog in the photo ? reminds me of my old doggie Micko she lived to be twenty !

I lost my soul mate on the 20th of March my lovely black cat Saylem I miss him terribly it is so quite with out him.

He would put his paw in my hand every night, bless him.

Read my blog you might be able to help me with regard to my question.

Nyt Nyt X

popshaw21 profile image
popshaw21 in reply to Jillymo

Hi jillymo,I hope you get to see your rheumatologist soon i would keep ringing them and chasing them up and be a nuisance.

Unfortunately I had to stop going to the RNH as it was getting exspensive and its such a long journey for me,so i decided to go to my local rheumatology department who haven't got the same exsperience as the RNH consultants.I keep a daily diary and write down everything that has been bothering me or worrying me for the rheumatologist to see.

The picture is my little poppy,she's a.. Parson jack russell.. and she's 6 years old and full of fun.she is such a character and loves to watch television,one of her favorite programmes is "You've been framed" and any programmes with animals in it.

As im severely sight impaired i concidered giving her up as it would be difficult to walk her on my own,but luckily a charity group called "Devon in Sight" have volunteers who walk poppy for me so i was so happy i can keep her.

Poppy also chase's away any pigeon's who come near the bird table without bothering the little birds.I haven't seen any starlings here only blue tits.robins,wag tails and black birds.Ive also taught poppy to fetch the post for me,and pick things up when ever i drop something.

well i hope you get your appointment sorted soon,and i hope you get the right treatment you need.

Take care

popshaw x

Jillymo profile image
Jillymo in reply to popshaw21

Hi Popshaw nice to hear from you.

Poppy looks a treasure, how lucky you found the dog walkers & what a relief not to have to part with her.

Maybe you can train her to put the washing in the machine.

I am still missing my cat, 'he was such great company'.

It was a lovely day here yesterday so i pottered in the garden, boy am i paying for it today.

I ache all over my heads pounding but i enjoyed being outside it has been such a long winter.

What a shame you cant get to the RNH any longer, i found it to be a friendly hospital with out the starchiness some other hospitals seem to have.

Did you see Prof Neil Mchugh ? I think somebody on here was talking about him,.

He is quite knowledgeable about our type of illness.....wish i could have seen him.

I cant understand how i can get transport to go to Oxford but not Bath. I told you i used to go the the eye hospital in bath by hospital transport.

I saw a Dr Diane he was good.

Still no appointments in the post today ! I have emailed my consultant but no reply as yet.

It gets hard work having to bat your own corner all the time plus very frustrating.

Keep your chin up

Jillymo

Charli84 profile image
Charli84

Hello there. Sorry to hear you are having problems. I just would like to say that I've been the same as you for about 4 weeks now. I get tested once a week and my INR should be 3-4 but I've lately been 5.9 then down to 1.5 then up to 2.2 then 5.6 then down to 2.2 again. Everytime I go they change my dose so I'm wondering what's going on to as we have a healthy diet and we don't drink and stuff.

I hope things settle down for you as I know it can be confusing and makes you feel a bit strange.

Charli x

popshaw21 profile image
popshaw21 in reply to Charli84

Hi charli,Thank you for your comment about my on going problems,I saw my rheumatologist yesterday and he did say he was a bit concerned with some of my blood tests and has increased the immunosuppresents which he thinks may help but would take sometime to kick in.

I do hope things improve for you,so take care and best wishes..

popshaw21 x

MaryF profile image
MaryFAdministrator

Hi there, sorry you feel so rough, I would second the answer above mine, I am sure also these low grade viruses floating around do not help. I have had one after another, and I am sure they affect everything, hope you pep up soon. Mary F x

I have struggled this week. Being on leave from work I fell out of sync and missed some of my Heparin injections. Trying to play catch up and with already poor memory to contend with, I began to feel the effects of fatigue, sleeping in later and started a headache that became difficult to shift despite meds. Have woken this morning with another headache and all I want to do is sleep. Feel so cold, fully dressed and wearing a scarf, I am cuddling a hot water bottle and trying to get warm! :(

Salty profile image
Salty

Erratic INR's on warfarin is a common occurrence in Hughes syndrome--no matter how careful you are with your diet and other things...

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