Tired beyond words!

Hi all,

Its a while since I blogged, as seem to only have time to look at questions and volunteer my limited experiences of RA. I have to tell you that as you know I have been doing quite well with my combination of meds (rattle rattle) but about ten days ago, actually after my Mtx on a friday night, I got an huge wave of fatigue, so rested expecting it to lift 24 hrs aft mtx, it has'nt! I am now dragging myself around, and actually stayed in bed Monday, just could'nt go to work. Now I hav'nt been doing too much or overdoing it, just my usual old lady life (& I'm not one).

I am now quite worried, as I hav'nt a gig of energy and have that feeling in my eyes like I hav'nt slept except I have it all day from the time I wake, actually I said to Dan, it feels like I have forgotten some of my medication. Has anyone ever felt like this. i know I know, RA comes with fatigue, but this is exceptional, in fact I'm heading to bed now! I am having monthly bloods done in morn so maybe somethings up there? I have no swellings, and only the usual aches nothing major. Am seeing my Rheumatologist on 13/6 ( & ortho surgeon on same day) .

Anyway, sorry for moaning. Nitey nite,

Gina.

35 Replies

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  • That sounds so hard Gina, know the 'eye' feeling especially when in a flare along with the all consuming tiredness (doesn't happen very often for me), maybe your bloods will show whats up for you - I hope its just a blip for you & normal service will be resumed asap.

    Not moaning - just saying how it is at the mo.

    Will be thinking about you tomorrow - hope you feel better & with more energy soon.

    Sleep well. Zzzzzzzzzz

    Andie

  • Morn. Gina., im still comng to life steroids havent kicked in yet>

    .Im having huge fatigue issues with RA was trying to blame my meds???!!, fatigue IS also side effect of gold??!!. no no its the illness they shrill when I ask, well how do they know.. lack of interest in patient anyway!!

    My physio from the hydro session is emailing the consultant as not happy !! elbows badly swollen they hurt less than wrist, hands and ankles.. as far im concerned they arent painful.. my less Swollen joints are the painful ones!!

    I only am working mornings cos need a nap in the afternoon.. the other option is to got bed 945pm latest.. there is a link between ra and sleep any way..I read a report that peroids of lack of sleep can case the disease to manifest iteslf in the first place.

  • Sorry you're feeling so flattened by fatigue:-( It moves in mysterious ways!

    I'm wondering if you're anaemic? Be sure to emphasise the 'unusual' nature of the fatigue so they can fast-track your blood results.

    Cece x

  • Oh Gina I do so feel for you, as you seemed to have kept so well for so long and been so positive and I have said to myself, I am going to be like Gina. I have suffered so with fatigue. And like you say when after all the swellings had gone and I had lost weight and was really trying hard with my new lifestyle diet I had this enormous great lump of fatigue, and you wonder "where the bloody hell has that come from" and likeyou say you wonder if you have taken your tablets properly. I even went through all my tablets and wrote them all down again, and then started ticking them off and I took them because I thought it was that. But when I mentioned it to OT she said, unfortunately I have seen this happen time and time again, It is the RA . my consultant sort of said the same thing but was not so nice about it!! Having said all that as it does so "out of context" with your RA make sure they listen to you. Good luck

    I do hope you feel better soon and take care

    Julie xx

  • Julie, Gina,

    I also say to myself ' I am going to be more like Gina'!!

    Hope you feel better soon x

  • I too suffer from fatigue - which is why I have now decided to stop working part-time. I have tried to blame it on all sorts of things but have to come to the conclusion it is the RA. I have tried blaming having a baby who didn't sleep through the night, being pregnant and having another baby who didn't sleep through the night. When I passed this stage I blamed methotrexate but I have now switched to Leuflonomide as it it wasn't working very well so can't blame it any more. I saw my GP at Christmas as I was slightly anaemic (due to RA) and have been taking iron tablets twice a day since - that hasn't made any difference! Went back again about 6 weeks ago and they did more tests for diabetes and Thyroid problems etc but they all came back normal so I have to conclude it is RA!

  • I too try to have a nap in the afternoon (when my toddler has his nap!) and I am usually in bed by 10. Still feel tired all the time but at least I can function.

  • Hi Gina,

    This sort of fatigue hit a friend of mine last year. Not an RA sufferer. She put it down to the usual tiredness of a teacher by half-term -except much worse. It turned out to be a major problem with her liver. She is OK now but she was really ill for months. As mtx can affect the liver I would suggest you see your GP. Good luck.

  • HI sue

    how did she know it was the liver? did they have to do specific tests?

    thanx

    fiona

  • Hi Gina

    Hope the blood tests reveal the problem and it can be quickly sorted. It could be an early first sign of an impending flare (sorry to look on the black side). If nothing shows in the blood results such as anaemia, very common with RA and easily diagnosed by a check of ferritin levels and treated with iron, worth checking with rheumatology as this level and sudden onset of fatigue shouldn't be ignored.

    Take care Gina, let us know how you go on,

    Lyn x

  • Thanks Lyn, I hope not impending flare or indication of liver problem, maybe just life with RA - its a pain in more ways than one!

  • Hi Lyn

    can you give your thoughts on me please. I am so tired that for example

    over bank holiday I slept 18 hrs got up for 6 slept 14 hrs etc,. Basically the days I am not working I am sleeping till about 3.30.

    mildly anaemic high CRP ESR. Think liver is reasonable? Actually the tiredness is what is robbing me of my life more than the limping baround with pain from RA.

    Hoping humira will help. My new GP would not sign me off sick ( I note Ginas advice to others about going off sick until sorted) but what do you do if you have the new breed GP who is implementing the wellness notes instead of sick notes as trhey used to be called. ) How sick do you have to be before you can get signed off now?

    My bloods are appalling- Some days I cant walk and the only way I can work is tf i sleep immediately I get home and on my days off. With breaks to chat on here. Its depressing really xx

  • Hi Gina,

    I know how you feel, i'm tired all the time, even though my blood tests say a different story. As for my eyes they are constantly puffy and very sore and my vision is very poor despite a new eye test and new glasses. I have to rest nearly all the time now and i get so fed up not being able to do much. Sunday i felt fairly well,but monday and since have felt like nothing on earth. I feel like i've got a hangover, but as i don't drink thats not the reason. I hate to say it but rest is the only answer. I fight against it all the time so i can't talk.. Ring your ra nurse and see what they have to say. They might advise to you to try another strategy. Hope you feel brighter soon.

    Luv Sylvi. x

  • Hi,

    Thanks everyone am a bit reassured and a tiny bit less tired this morn, just made huge fruit salad! Saw my GP's nurse Liz for monthly bloods this morn & mentioned tiredness (after she said I looked well & had lost weight!) She included some additional blood tests incl B12 (can't remember rest) I have also an underactive thyroid, but this has been controlled for years! I got her to look back at my ESR on her computer and the highest it was ever was 55, it should be under 12 & its 7 now. Maybe we have a different measurement here? I think many of you mentioned higher levels, Anyway, as we were generally chatting about other things so I got distracted.

    She said she will keep eye out for my results prob back tomorrow and doc will ring me on Friday with them (i'll ring her probably)

    Lyn, I suspected liver problem too, thats why I'm scared! Hopefully, all will be Ok and is just darned condition. I think even part time work is tiring me, but have no choice! Big debts, small income!

    On another subject, my youngest daughter Jenny (20) complained this morn that I'm always on my laptop these days! I thought it was mums that said that!!!

  • My consultant told me earlier in the year that even when the inflammation is under control and when blood results are good, the fatigue in RA can be intractable and an enduring problem:-(

    The only thing that works is pacing - but life and work happens and it doesn't always work out!

    Some weeks what normally works as 'pacing' just ups and goes for no apparent reason and I'm floored by dreadful tiredness and can do nothing other than rest, rest and rest some more.

    I came across a nice quote yesterday (forgotten source already!)

    'When rocks are thrown in my way - I pick them up and continue my journey - one day I will build a castle with them'.

    For me fatigue is one of those rocks - I sit down a while, then continue on my path:-)

    Cece x

  • blood test reasuuring.. beware. i lost load of weight in 2009 shortly before contracting diease some times loss of weight can be disease activity indicator hope this is not the case as in looking forward to chelt meet.. xx

    Alison x

  • Alison, I have been trying to loose weight since Jan & off steroids so would say thats why :( (hopefuly)

  • phew.. hope so smile xx. in still in steroids and fat lol xx,

  • fluffing humira injection certainly has'nt helped me today :(

  • Gina, I've had loss of weight and tiredeness since coming off of steroids last October.

    The loss of weight I look on as a bonus.

    My tiredeness has not been as severe as yours although I have had days when all I wanted to do was sleep all day and did. As I am retired I dont have to do much anyway so was able to rest.

    When I was taking steroids one of our GP's asked me what time of day I took them, I replied that I took them in the morning. He went on to imply that they contained something which would keep me awake if I took them in the evening.

    If that is correct tiredeness may be a symptom of withdrawal of steroids (coupled with fatigue associated with RA). Someone on here may be able to confirm/deny this.

    All the best

    Judi xxxx

  • Thanks Judi, I had heard that too about steroids, but did'nt think would still be affecting me 6 months later, have lots of questions to bombard consultant about in June. I'd like to be retired, you could really pace then.

    xx

  • steroids are taken in the morning cos thats when the bodys adrenal glands secrete your biological natural equivalent of the drug steroid or corticosteroid to give them the full correct name..

    The most commonly prescribed sort is oral prednisolone tablets.

    the way I explain steroids to patients is above!, and I add that in times of crisis eg RA flare, bad asthma flare, body needs a bit of extra help hence the steroids to help body deal with the problem in hand.. doses to go down in a controlled way.. because body senses you are getting a source from else were.. so it shuts down its own production.. which then should restart its own production when the dose is tapered.. down ( reduced) steroids are efectively a stimulant !so in some people especially at high doses can affect sleep at night.. mine however wear off by lunch time and fatigue rears its ugly head.. putting my dose back up a couple of mg due to current difficulties.. gp knows I do this I Issue steroids every day to patients

  • My Rheum Consultant does'nt like prescibing in excess of 7.5 mg pred long term, wonder why?

  • Usually because of the long term side effects such as osteoporosis! I have adrenal suppression (gland no longer produces its own corticosteroid) due to long term use of oral steroids.Consequently I'll be on a low dose for life ... barring a miracle. I never give up hope!

  • I woudnt take above 7.5mg unless in bad flare this my 2nd lot of steroids in just over two years due to flares due to my consultants "choice of drugs!. bone scan lst year ok.. buy my own calcium vit d.! Im on 11-12 mg had just gone down to 9mg when flare and or parodoxical rreaction occurred. this means the gold injection started to cause the symptons that it is trying to help.. great!!. 9this happened the last two weeks after the injection)

    Gp not impressed on thur night after the injection was so bad if IF I COULD I would have gone to A and E.

    I saw a diff Gp friday the on call dr at my Gp practice.. she had never even met me before.. she was going to ring the consultant's sec immediately.. I had spoke to rheum nurse and we agreed that I WILL SUSPEND gold next week and then re introduce following week to see if the effect reoccurs!!, but the nurse said she COULDNT get get my consultant pushed forward!> bonkers !the gp said. she didnt want to be rude and the use other word that sounds like bullocks but the spelling is different.

    At this point I REVEALED to the DR that professionally I find that particular nurse brisk, and dismissive when approached regarding advice./. treatment.

    I asked to be removed to different hospital,, this Gp was honest enough to tell new what I knew last blog "news flash" that Gloucester health authority is in financial crisis!!.. and guess what if I MOVE to a different hospital guess were the funding comes from.? Glos health authority...aagh.!! Gp SAYS obviously I COULD pay for my own treatment I CANT afford it and why should I! am still working just no thanks to nhs as an employer or treatment provider!, this country is full of immigrants and health tourists. who arent contributring to the economy by working and have no british citizen status, this isnt racial. its factual.. they fly in for surgery and leave without paying,, non british residents are meant to pay for treatment.

    My parents friend who is wealthy is paying for his rheum treatment £400 a month

    well if I told you were there that it would leave me financially!!.

  • You must be very frustrated I feel for you. I think it is really terrible that our disease is not more tightly controlled and it is such a postcode lottery.

    like you I am trying to work and pay taxes but HAD to go private to get Biologics. If not I would have had to wait god knows how long for an emergency appointment. My only other option would have been A and E. Which incidentally was how I got diagnosed in October. I think its a public scandel frankly. To be honest its just plain feckin stupid as it costs the NHS so much more to let people RA get out of hand because they cant access the treatment they need on the NHS and then end up with uncontrolled flares and ultimately medical retirement/ possibly long term benefits. Dont give up Alison keep battling. Sometimes it is a case of those who shout loudest get.

    Holler until your hoarse maybe someone might actually " Get it "

    Fiona xxx

  • are you paying for the biologics yourself?. my full time salary is ok.. but on 17.5HRS pay its not I get cross with better treatment I COULD work more hours what a waste of my training lol xx

  • No sorry bit confusing how I put that. I had to pay to see consultant when I was in a v bad flare as he had no follow up/emergency appointments for 2-4 weeks. This appointment was what got me fast tracked to biologics. He then referred presc back to NHS. I couldnt afford private had to scrape togetjher £ 200.00 quid for one off consultation.

    Fiona xxxx

  • Alison,

    Might be worth it to get the money together to get a private Consultation & the prescription back on NHS - that is what happened me too! I can see you taking these people to task, you sound like prime candidate for anti tnf!!!! There is no one who could afford to pay privately for anti tnf , it can cost €10,000 a year!

    xxx Gina.

  • well as i no longer earn that a year>>>>>!!!

  • yeh was thinking of something drastic like holding consultant to ransom but will get black listed and or sacked ho ho!!

  • Or marry one/ or the more modern version!, you'd get state of the art drugs for free! Haha! :)))

    or stalk aRheumy! LOL!

  • What about the local paper? Or is that a bit to dodgy jobwise? xx

  • dodgy job wise would have to anonymous and I couldnt risk saying I worked there in any comment. ps the consultants at my hospital are female if any knows of an avaiable dishy/ kind rheumatologist male within 40 miles of Gloucester let me know!

  • Rich consultant would mean I could only work 20hrs without any financial worries!!. (Gina!)!! Any way good news this morning Sparkle been contacted at 9.30 am by ex clients mother im going to do 3 hrs pm. TOtal / weekend free lance dementia assistance on a friendship/ minor renumeration basis I am still crb registered. and wow nhs have just done a dementia awareness work thing whilst off sick.. again training lacking in this area for nhs staff.. did three days intensive training when I was a community support worker for dementia care trust. think they read two sides of a4 and had an hour long training session.. guess that you fiona are the best source of knowledge by far on all issues dementia related. any way It is an unofficial arrangement based on the care and companionship provided by myself for this particular client when I was studying for my pharmacy qualifaction. quite excited as the diversion from present things would be emotionally good x

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