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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009 Posts: 106 Location: cornwall
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HI ALL
NOT BEEN ON FOR A WHILE BUT NEED SOME ADVICE PLEEEEASE
PAIN WISE I AM IN A GOOD PLACE AT THE MOMENT
FATIGUE ---BOY AM I STRUGGLING
I WALK AT A SNAILS PACE ANY INCLINE IS LIKE A MOUNTAIN HIKE--STAIRS ARE THE SAME TIRED--I WORK 41/2 TO 5 HOURS 4 DAY A WEEK AND I'M EXHAUSTED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I'M ON HYDROXHAVE BEEN FOR 21/2 YEARS/CO CODAMOL 30-500--I'VE BEEN ON SLX FOR NEARLY 3 MONTHS AND IF ANYTHING MY ENERGY LEVELS ARE WORSE I'VE ONLY BEEN ABLE TO TAKE 1000MG--SHUD BE UPTON 2000MG--IT MAKES ME FEEL--VERY UNWELL IF I INCREASE--BLOOD ARE EXCELENT--ACCORDING TO MY GP AND MY MONITORING BOOK---WHY DO I FEEL SO RUBBISH??????????
I HAVE HAD TO GO TO BED THIS AFTERNOON--SLEPT FOR 1HR NOW AWAKE HAD TEA AND FEEL AS IF I NEED TO GO BACK AGAIN
SO DOWN AT HTE MO
SORRY
CAZ X
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi Caz
Sorry to hear you're feeling so rough. I can't offr any solutions though- just support and sympathy!I've found that fatigue can hit me at any time- there doesn't seem to be any pattern to it. I work 4 days a week- as from September I will be down to 4 with weds off, and I'm hoping that will help. I often sleep a lot at weekends- Friday and yesterday I slept a lot both days. Sometimes it takes me about 1/2 hr to walk back from town- uually takes 10 mins! How long have you had RA? At the beginning I really suffered with fatigue,t got better after about a year (I've had RA 2 1/2 yrs). You say bloods are ok- have you had iron and hemoglobin checked? Mine have been below normal for a few tests so I'm very tired and anemic- they're keeping an eye on it. To be honest, I just go with it if I'm tired. Maybe you oculd ring oyur rheummy helpline to see if they can help you at all?
Take care
Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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so sorry that you are feeling soo tired. This wretched RA does make us all extremely tired.
I hate it. I also do suffer badly with tiredness and my feet are awful they just do not want to move. They give way at ankles.
Lets hope someone can come up with good answers.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Caz Gentle hugs,i recently posted same thing im finding the excessive hot weather is adding to my fatigue levels,for me it is also affecting daily life big time.im sleeping well napping alot more. It can be number things adding to it,have you come out of bad flare and not Ra controlled,for me i have and also mini flares i et fatigue afterwards,way body showing needs some rest maybe. but i can say at some point it will ease off again,id ahd good period of little fatigue for some months. maybe mention to gp aswell. are you overdoing things this is big trigger for alot. my heart goes out to you to share in creeping along same path as you,except fact your doing well workig im not well only as volunteer. much lv keep posting when can. extra water as well with heat. lv Melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Hi Caz, sorry to hear about the fatigue. Unfortunately the only way I deal with it is by doing things in short bursts - try and rest (even if just a sit down with feet up) between each chore/activity which I know can be difficult to do whilst at work. Are you able to reduce your hours? I only work four days a week albeit they can be long.
Take care, Nina
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009 Posts: 106 Location: cornwall
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hi all
bloods are being monitored 2 weekly
iron/haemo is very good --this is the trouble everything points to me being healthy!!!!!!!!!!!!!!!!!
altho dr has looked this week at my thyroid to make sure he's not missing something.
i'm not aware of a bad flare up--that i'm aware of--only tjhing that has changed is the start of SLZ
maybe i've had lots of mini flares--like youself and am still stuggling to get back on track
due for review on the 6th aug--hubby is coming in with me this time--normally he will take me and wait unless i ask for him--cos my memory is b---dy awful and i don't always ask the questions i had planned to.
fatigue is something i've been aware of really from day 1-----this all started 2 1/2 years ago--dr was quick off the mark naproxen/co-codamol/omeprazol-went to hosp diag with sjurgrens --given hydoxy--consult said this should help with pain and fatigue---altho has helped with pain--fatugue is still a prob.
back in january---consult dropped half his list----no one told me and i had to ask for my next rev---anyway seen new consult and within a month i was told bloods are now clear enough to diag RA---so in may after further blds she started me on SLZ--but i have not been able to increase to full dose of 2000mg--i have been feeling worse as far as fatugue since i started--hubby says my energy lvels have bcome worse since i started SLZ---but blds are the best they've ever been as far as inflamation and heamoglobin etc--so in limbo at the moment keep fingers crossed that she will have an answer end of next week
many thanks for you reply
i haven'y been on line much recently --hubby is creating a web site so he tends to hog the computer
i had forgotten how much help talking to all of you with RA helps
many thanks again
i promise to stay in touch more often
thankyou everybody
caz x
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009 Posts: 106 Location: cornwall
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with regards to work
i have been working reduced hours from the first diagnosis
i was full time--i only doing between 18 and 25 ghours a week--the 25 hours is a half day cover for hols/sickness ona monday--usually my day off
so i really have 3 days off over the weekend
alto i'm prob a fool to myself covering on a monday!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
i will see waht the consultant says next week and mybe i'll think about leaving altogether--it has been running around in my mind for a while now
it maybe is time for serious thoughts
thankyou guys for your support
cazx
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009 Posts: 103
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Hi Caz,I'm afraid I can't offer any helpful advice as I am in the same position regarding tiredness.  I've been on Hydroxy for over 2 years and have been on Methotrexate for about 10 weeks and find tiredness and fatigue has escalated since starting the MTX.My walking pace has become a lot slower and I find I now only have small bursts of energy throughout the day.Just standing doing the ironing takes it's toll.But I find it's best if I try and pace myself throughout the day,doing a job,taking a short break then starting again.Some evenings I feel I am ready for bed at 8pm but I force myself to stay up to at least 10pm otherwise the nights are so long.I have blood tests done every two weeks and they have been OK so far.I think fatigue is something which all RA sufferers complain about.The only time I had loads of energy was when I was on steroids for 6 weeks and I could do anything without getting tired. Take care, Brenda.
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009 Posts: 106 Location: cornwall
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hi brenda
thanks for your reply
i don't think working helps--4 and half hours is my limit!!!!!
and working as a doctor's receptionist is also mentally tiring.
as i type now i could quite easily go to bed but like yourself i try and make myself stay up til 10pm
i'm on SLZ have been since end of may but being unable to increase as i should have by now to 2000mg per day has made things awkward as well
i'm due for review next week so i maybe joing you on methotrexate
how are you finding taking it?
many thanks again for your reply
caz x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Caz You aren't by any chance RA sero-negative are you? This does affect the blood results which often become very unreliable. My ESR is 25 CRP 1, and I'm in an absolute mess! Last year ESR 122 CRP 7, I could have climbed Everest!!! Needless to say I am sero-negative! Just thought I would ask! Hope things improve very soon, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hi Caz, you may find these NRAS links very helpful xx http://www.nras.org.uk/h...x?id=a0B80000008aJ8XEAU
http://www.nras.org.uk/h...x?id=a0B80000005CJTiEAO
I also added this about sero negative / positive, after reading Lyn's post this might be useful to look at xx http://www.nras.org.uk/h...x?id=a0B80000008aJ8hEAE
Take care Caz, let us know how things go. Love Liz xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009 Posts: 106 Location: cornwall
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hi lynn
altho have been sjogrens in the past recent letter from hospital states--anti ccp blds very highlypositive for RA so should start SLZ and.or methotrexate
my dr also says blood are the vest they've ver been since all this started
so not at all sure where i stand at the moment
like you very good bloods--ESR 10 CRP less than 1.5--
am due a review next friday the 6th so i'll wait and see what consult says--but VERY FRUSTRATED
thanks for your reply
caz x
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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Sulfasalazine wrecked my mood and energy levels (not good to start with of course with active RA) but I could tell that drug did not agree with me. Discuss it with docs? Sorry you are struggling so. xfx
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009 Posts: 103
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Hi again,I'm only on 7.5mg of MTX and so far so good,no side effects except for fatigue. I was originally started on 15mg but after two weeks came out in a red itchy rash so the consultant halved the dosage and it's been OK since.I see the rheumy nuse beginning of Sept. so the dose may be increased then.Must say I've had no severe pain or joint probs since being on MTX.The last bad flare I had was back in Jan/Feb.My last Das score was good so the Hydroxy and MTX must be doing some good.Hope your review goes well. Brenda.x
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Rank: Advanced Member  Groups: Registered
Joined: 6/16/2010 Posts: 39 Location: Edinburgh
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fatigue is just pants, probably the most irritating thing in the world
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Rank: Advanced Member
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Joined: 2/26/2010 Posts: 271 Location: hampshire
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Hi, have just picked up this thread, I had awful problems with sulph so much so had to come off it. Extreme tiredness was one of the better side effects I had! It made me feel very ill, tired and terrible black moods and depression. My rheummy nurse told me that it wasnt unusual to have these side effects, he knew of onepatient who was on sulph and wanted to kill his wife!!!!
Hope you are feeling much better now?
Take care
Heatherxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi, SLZ caused havoc with my liver and as for my mood, well all I can say is it definitely affected mine and to my knowledge is listed as one of the side effects.
Caz hope you get some answers at your next appointment and hope it goes well.
love,
Barbara XXXXXX
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Rank: Member  Groups: Registered
Joined: 12/8/2009 Posts: 27
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merryberry wrote:Sulfasalazine wrecked my mood and energy levels (not good to start with of course with active RA) but I could tell that drug did not agree with me. Discuss it with docs? Sorry you are struggling so. xfx I definitely put my mood and fatigue down to Sulf too. My only advice is don't fight the fatigue. If I have to go for a nap, I just have to. Not always easy with two small children, but luckily Osh still has a 2 hour nap lol, and I take advantage.
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Rank: Member  Groups: Registered
Joined: 1/11/2010 Posts: 14
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sorry to hear about the fatuige, it s awfull isnt it. I would sugest getting your b12 tested, low b12 is associated with fatuige also as this was the case with me. i ts easy to treat though once you have the diagnosis confirmed. Good luck, i hope you feel better soon
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Typically RA drains one of iron as do the meds so the combination (sometimes) can be lethal!
You need to have your full iron levels checked- not just the HB. If you're deficient in B12 then you can take a complex Vit B for that.
There are many iron building herbs too you can try and tonics. One herb which is good for iron levels is yellow dock, and burdock too. Nettles are an excellent source of minerals and vits and are blood cleansing.
Any supplement from a health shop, like Spa tone, contains so little iron they are not worth taking!
SLZ is renowned for being a depressive drug- I despised taking it.
Love,
Amanda
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