Can anyone tell me why do some days I feel like someone had physically drained every last bit of energy from me?
My pain hasnt been too bad but my god I haven't even washed a dish for 2 days and then suddenly tonight my energy came back and I was able to tidy up! What causes this? It's worse than crawling down the stairs in the morning in agony as I can take pills to make that bearable, any views or help to tackle this would be so welcomed x
If you're anything like me I think you've answered your own question without realising. You're able to take pills to control the pain but the disease is active in spite of it hence the feeling fatigued. Good pain control is wonderful but as our body isn't able to tell us we're doing too much by sending pain signals (because we're blocking them) it does it by the only other way it can, making us fatigued. You rested so your disease said "ok, thanks I'll let you do things again now". I know it's simplistic but that's how I read my body. If I'm over tired I've done too much & pay for it if I don't rest. Waking up in the chair at 3.25am this morning was a good example, the last few days (PIP assessment, hospital visits etc) & 3 weeks off MTX have obviously had an effect! 
Thinking logically you are right, the first part of the week I was trying to get so much done and I was mad busy helping at school and with the church setvice for the kids too, I'm realising now that my body makes me pay for this by completely shutting down. It is so frustrating expecially this time of year! I'm still undiagnosed and rheumatology app is 4 weeks away; seriously hoping for answers from him but I'm aware a diagnosis doesnt seem to come quickly, thanks nomoreheels you are a star xx
No, just had RD 6 years! Once you've seen your Rheumy (eventually) & he gets you sorted with some meds, give them a little time & you'll find you can do more & you'll swerve the sledgehammer. Overdo it & it'll hit you full on. Enjoy your Christmas, it'll be difficult but do try not to overdo things or if you do put aside some you time for the next day. x
Never a truer word has been spoken and i like the way you describe your fatigue and i must agree as that is me down to a t. I am down here and it is 5.30 am and i have not slept particually well to be honest. xxxxx
Oh I'm sorry Sylvi. Until recently I had long, lonely nights so I understand just how wretched you must feel. x
My goodness I know that awful frustrating scenario of waking up all stiff and uncomfy early hours on the sofa when you have nodded off ... my tiredness seems to be here despite low ESR and CRP and RA under better control than it has for years. I put it down to the Fentanyl which is not too high a dose but from first taking it it has zonked me out quite a lot. I'm quite good and seem to have energy if I am out/on the go/doing things, but TV and computer screens and warm rooms .... and I am off Zzzzz-ing! Sounds like you have had a very tiring time NMH and at a very busy time of year. Stress of all the appointments .. especially PIP type things ... and pain of getting there makes you tired. This was me until recently ... constant diary full of appointments. (Seen six different "ologists" this year!!) Lull in those for the past couple of months but a few coming up in Jan. NK x
It's that awful period of waking up enough to not bump into things yet hoping you don't wake so much it stops you sleeping once you've made it into bed. Having gingerly negotiated the stairs & get in the bedroom I generally trip over the dog & then the light on my h's iPhone shines telling him the time... he's shining it my way so I can get in bed safely!
My ESR & CRP are also low, well, within range & I'd not considered the BuTrans being a contributing factor, you saying about Fenatyl. I'd always associated my sleeping better with amitriptyline but both were started together so who knows?
Made me smile with your "ologists", thinking back to the advert, Beattie & her grandson getting an "ology"! I hope they all make sense of your ills & put you on the right track. We have an important appointment with my h's Surgeon first thing then will try to look at relaxing a bit before the festivities start!
Good luck for your appointments next month. x
Hi NMH . . hope all gone well with your husband's appointment and hope you can both now relax and enjoy the start of festivities! I usually do a "ta-dah" .. when I make it into bed and land with a bounce! ... and disturb the perfectly placed quilt and throw! .. and my husband tuts! It is such a relief to get there isn't it? We don't have a dog or cat to trip over though! 
I am slowly working through the "ologists", thank you! Yes .. LOL .. I thought of that wonderful Beattie/BT ad too! Loved Maureen Lipman in that! Some of the many ologist things have been a link/referral from RA and others different appointments altogether. Some scans and allergies. Routine stuff too. I just have to plough on and get these things sorted. I said to my GP .. people must think I am one of those loons who likes having medical things done! NOT!! She laughed and shook her head. It has been one long blummin appointment this year, but many of us know how that feels. January sees RA and Thyroid check ups but as I have had a few weeks free of it all .. not too bad.
Most of all would love my Reumatologist to help more with my knee and the soft tissue issues. I think they want to push fast to replacement and won't allow a scan to see what is going on with the popliteal fossa (the area/depression in the back of the knee.) I need to see my knee xray and see if mis-alignment of the bones is enough to be pushing back ... and pushing out the alignment and trapping nerves/tendons behind in that area. (Was told by a Registrar in October . . you have moderate to severe knee damage ... but no sight of my xray or further explanation?? not good enough!) I did have a Baker's Cyst last year and many times have had in the past, but have been told it is not there now. Unless they scan they will not know what is happening. I must try get my GP to refer me separately if my reumatologist won't entertain investigation. Odd business ... we have come to almost an unpleasant exchange about it. I don't have any pain whatsoever from the knee joint or front of knee. Seems all soft tissue related at the back but maybe the OA is causing that. I am not about to go have a replacement or even consult with an orthopaedic surgeon till at least I know what is happening at the back of it. Feel a definite resentment from them that I take a scholarly interest into my knee and RA. It is in my nature to research.
Yes, Fentanyl and similar patches are known for making you feel varying degrees of drowsy. I was told to expect it. When I went up to 50mcg/hour last year before my RA got more under control I was sleeping again within two hours of getting up and also had aural hallucinations on 50 dose, so came back down to 25 which is more suited for now. As long as I am occupied (and not relaxed on the sofa) I can keep awake. Is Amitriptyline for night times only? ... I seem to think it is.
Long ramble .. apols . .and Jackie, hoping you are due for a big burst of energy .. think I am due a spell of chosen slumber having battled some very grumpy shoppers in M&S this morning. However, one nice lady shopper in the queue gave us her duplicate £5 off as we had a large trolley full well over £50 and said Happy Christmas! So not all bad tempered in M&S. A little rest now before we head off early evening to see the White Christmas musical in Leeds. Jackie .. If no energy burst, then it is customary to lounge on the sofa christmas time with chocs, a glass of something bubbly and DVDs/TV films on Seriously hope you can get some more oomph. Send some my way if you do! I honestly think we often do more than we take credit for then feel jiggered. Mental stress of RA also makes our bodies tired. Always has for me.
Yes, NMH, and Jackie I would check painkillers/patches etc, and see if they have drowsiness as a more frequent side effect. Sometimes if you know what causes it .. and it causes it to many people .. then you don't feel so bad about being sleepy. I know a guy with bad back problems who cannot tolerate lowest dose Fentanyl and he is a huge strapping man and me a smallish gal ... it sent him to sleep nearly all the time! Unable to drive. My Vip Van Winkles are always sofa related. Also this time of year, central heating sends you off to slumber easier too I find.
To finish .. just listening to R2 with all the Christmas songs (not necessarily carols) What is everyone's favourite? Apologies if this has been asked on another thread but I haven't seen everything lately on NRAS. Need a catch up! I love the new song by Military Voices and then love one of my all time fave band's song Thank God It's Christmas by Queen. Also a beautiful song by Greg Lake called Footprints in the Snow. Of course he has his more famous Christmas song!
Hope Sylvi is feeling much, much better and those problems are subsiding and you are looking forward to Christmas and ready to eat some goodies! xx
Sending hugs to all.
MERRY CHRISTMAS .. here's to good/better health too in the New Year.
NK xxxxx
Ooo! A big catch up, will keep mine short & sweet as only just got up & brain not in gear properly yet! Up early this morning & it caught up with me. The appointment went exceedingly well thank you. He's confirmed he's to have a quadruple heart bypass, 6 to 8 weeks waiting but in the cancellation list so if some unfortunately soul doesn't have or need one any more it could be earlier. We'd previously understood it would be a triple possibly quadruple as the one behind his heart is totally blocked but his Surgeon is confident he'll be able to access it so quad it is. Apparently he's a good "candidate" for the op & don't envisage him being in hospital more than 3 days! Remarkable, his aunt was in 3 weeks with total bed rest going back around 20 years, same op, coronary artery bypass grafts (CABG, cabbage!!, my GP who is a long-standing friend delighted in telling me!).
You tell em girl, they're your knees. Sometimes they need to listen to the patient & accept some of us prefer to be kept in the UK, even be proactive. I hope your GP comes to agree with you & refers you separately then maybe you'll make more progress finding mercenaries the cause.
Yes, amitriptyline I take at night, 25mg, think that's the norm but BuTrans since getting up to 20mcg must have made the difference the more I think about it. My h is similar to the guy you know, can't take such meds, knock him sideways!
Have a wonderful time tonight. White Christmas has some lovely songs & yes we've done Christmas songs but I don't know the Greg Lake one, must look & see if I can find it on YouTube, only thought he'd done the one. We laughed so much at John Bishop's Christmas show on tv last night!! Got us into the spirit of it that bad been missing til then.
Have a lovely Christmas Julie & l hope 2015 is a more positive one in every way. x
Coming up on 3 years of feeling like that. I look forward to finding some drugs that will not only alleviate the pain but the fatigue. I live in hope
I know when my ESR is up when I suffer the dreaded fatigue. Stress can play a big part as well. I see it as my diseases way of telling me to slow down. Hope you continue to fell as Ok as you can with RD. Xx
Oh how I agree!! I was supposed to be at a family Christmas Dinner last night but there was no way I could attend. After a very heavy week my body just gave up! I had my grandchildren for the weekend as we have our Christmas when they are here - I sort of managed the gathering of 11 people for Christmas tea on Saturday with my granddaughter's help. Now 3 more days at work then just my Aunt and Cousin round for Christmas dinner. I hope I can keep going until Boxing Day, then I can give in to this completely! I know they tell you to pace yourself, but it's so difficult to do, especially working full time. PLEEEASE let me know if you find anything to help. Have a good Christmas.
Totally Classic RD every so often I can't even manage to get Further than the bed to the bathroom and will spend a day in bed... Next day all is fine again...I always call it a recharge the body day... However I do often find its if I have eaten something I know I shouldn't have the day before... Sorry I am not being any help but its always good to know we are not alone x
Fatigue is now one of my biggest problems now that the pain has been damped down with lorry loads of medications. Some of the exhaustion can be put down to the meds ( in my case), but the variability suggests that the illness itself is largely responsible. The maddening thing is that I find the lead time between overdoing it and being wiped out varies.
I often say that I only have two speeds; Flat Out ( ie going as fast as I can ( which is very much slower than it used to be) and Flat Out ( on the bed). Funny, the English language, eh!
Good luck with the formal diagnosis, and as Happy a Christmas as possible. Jo x
Hi jo, im not on any RA meds yet as im waiting confirmation from the rheumatologist for what the doctor strongly suspects and my the fatigue I suffer is horrendous! I guess im hoping for a cure for all this when I am diagnosed amd get some medication but im afraid I have to come to terms with a life of change, that I think is going to hit me hardest x
I too have 2 speeds, the same two. Ha ha. Pacing myself is hard when I have some energy because after being "down and out", there is so much to do and I get this compulsion to get every bit of it done so I can relax. It's a horrible cycle for me. I don't have much help. If I lived alone I could keep up with my and my 4 cats daily messes, but I live with my significant other who works and is old fashioned as he thinks because I do not work, it is my job to clean up after him. He does not understand my diseases and doesn't realize I need help. Me telling him over and over hasn't seemed to get thru to him. I am so overwhelmed as he is always talking about how stressed out he is. If he had to live one day in my body, I don't think he would survive it. I clean my entire house and by the next day, it's as if I hadn't done a thing. I have a hard time resting when my home is a mess. I'm sorry for all the complaints. I feel like I'm drowning right now. Again, I apologize for making this post about me. The self pity took over.
We recognise the difficulties when someone posts about them & it's only natural when we relate to them it revolves & it turns into our life so don't worry, we understand.
Has your partner ever been to your Rheumy appointments with you? My h does & finds them helpful as he gets to hear the truth, what I otherwise try to hide from him, my daily struggles. He recognises the signs better now understanding more, helps where he can & says that's because of coming with me. Sounds as though your partner needs a touch of "your" reality. Doubtless he encounters the stresses of life, we all do, but we have them & then some!
Hi Kelly, I can so understand how you feel this way! Im alone with 4 children under 9, I have no real family help or support, my mum is not helpful as she really wont accept what im going through is so awful! I find people just dont see how serious and life changing this disease is, if I do my hair and put make up I look fine so people think im fine!
This is true Jackie .. people do not understand how tiring it is. I am feeling tired just imagining having four children under nine!! You are amazing to be keeping you and your family going. Aww I wish your Mum/people would understand more and that you could get support from them, but support is always here on this wonderful Forum. NK x
I know none of you can diagnose me but this really does sound indicative of RA, I think its driving me mad only having the doctors opinion instead of a specialist! I genuinely believe ive found out more information on here than in any of my numerous doctors appointments and there has been so many over the last 6 months! Thank you all for feedback and I think maybe I'll take my medication to bed on xmas eve and take an hour before the children wake me for present opening. I usually come downstairs at least an hour before I wake them for school as I hate them to see me in so much pain, I hope you all make it through xmas safety and without too much pain! Xx
Looking at your reply to Jo & further question it's sounding as though you're reasonably well prepared Jackie, more so than some others who have reached out here pre official diagnosis. You're already planning, that's good for both you & your children, for the big day especially.
I think the way my early journey went was far better than most..... GP - blood test - diagnostic clinic & on DMARD etc all within 3 weeks. I was well on the way to being controlled by the time I had my initial Rheumatology appointment 3 months later, certainly less pain & able to walk far better. Maybe if the NHS put in place diagnostic clinics once a positive blood test indicates the need for investigation/confirmation instead of people needing to wait 3 months (sometimes more) for a Rheumy appointment & meds we'd have less people desperate for help. The timescale for initial consultation as it is now seems archaic given that the meds we need take a while to reach their potential & the fact that the earlier we are are treated the better the prognosis. It would free up the overstretched Rheumy departments as well I would think.
Of course I was fortunate that there was little doubt from the off that I had an inflammatory condition so in a way fortunate they knew what they needed to test for & the images required but I would have been sent to the diagnostic clinic whatever the blood test read to determine what was causing my problems rather than my GP attempting to treat something of unknown cause & running the risk of further delaying the treatment I needed. Just saying!
Just sitting thinking Jackie waiting for my f-i-i's heart nurse to come before we can go shopping. I know your GP has prescribed you appropriate pain relief, as far as he can within his remit, but just checking that he's also prescribed you a stomach protector to take with them as well, omeprazole or similar. Bothered that if you're relying on your pain meds heavily you risk upsetting your tum without a ppi & you don't need that's on top of everything else. x
Actually I was thinking about that this morning, every morning I had to run to the loo and it is quite severe! My doctor said I was fine if I took the naproxen and all the others with food but I stopped the naproxen for 3 days and my stomach was fine so off to the docs again to get something from him, I really do find im telling him what I need and he just writes the prescription out! I asked him for the amitriptyline, ive just gone back on them as sleep is impossible, my eyes ping open after an hour and thats the pattern for the whole night xx
Mmm, whilst I appreciate a doctor who is willing to listen why I would prefer not to go down routes with certain drugs & prepared to talk through the options with me I'm not sure I'd like one who just prints off a script without at least checking if it's the correct one or if there's a more suitable alternative! I do hope your GP does as you ask & gives you a script lol...but really knowing you were taking them regularly should have automatically prescribed a ppi, or it should have flagged up on your rescript that you're requesting an NSAID regularly (monthly I would think?) & the person printing off your request should have advised your GP seeing there was no repeat order for a ppi also.
I also found amitriptyline useful when we had whiplash last year, 10mg, & my GP gave us each a short course of them. When I had my latest pain med review opted for them again same dose, to help reduced cervicogenic headaches. Up to 25mg now & so helpful for that & also a more restful, replenishing sleep. That & the BuTrans patches seem to cover my pain quite well only needing co-codamol for breakthrough pain now.
RA is an immune system problem that attacks the joints.
Also depending on the medications you take some of them especially DMARDS are immune suppressing medications that slow these attacks down.
If you are taking NSID and Pain medications such as Tramadol they have several contraindications. If you are taking medications for nuro pain such Amytryptalene Antidepressant they may cause further contraindications.
RA in its own right can also make you tired because of the attack on the immune system
The RA Nurse will be able to explain better than me
BOB
We haven't talked about it much, recently but I think that another topic related to fatigue is pacing. I think fatigue is connected to levels of inflammation in your body which aren't always shown by pain. But when things get difficult, its important to pace yourself. Do a job and then sit down. Dont take too much on. Sometimes I can get over the fatigue quite quickly, other times it requires an hour in bed. Sometimes that hour is worth so much. Then there are days when you know its hopeless and its best to go with it.
My experience of 15 years nearly is that its the inflammation, effects of pain and sometimes the meds (because the fatigue follows the day I take them).
I hope things on this page help and I hope they can get your RA under control soon,
C
Good idea Cathie. I think we just get used to doing things our way like only ironing 3 items then sitting for a few minutes, hoovering one room then having a break before attempting the next. We all find ways & routines that suit us best rather than running in headlong (!) but that may be more difficult with children to consider. I still overdo things at times but, like you, don't deny myself a lie down if I need it & then I invariably fall asleep which only confirms I've overdone things.
I often give myself an hour and set the alarm on my phone. I've most hours covered on the phone now! I try not to sleep for any longer as night time sleeping becomes difficult then. I think its not the worst adjustment I've had to make in my life!
It can be a double-edged sword that's for sure Cathie & yes, one of the easier things I've needed to adapt to. Far more difficult ones I can think of!
The only thing that really helps the fatigue for me is a B12 injection. Rest doesn't help me at all. The more I sleep, the more I want to sleep.
I am happy to hear the injections help u. I only give myself one a month. I have not had my levels checked so maybe I should have them done. They don't seem to make a difference for me. I was so low a few years back, maybe I need them more often. I'm overwhelmed with all the different appointments and doctors. How often do u take your B-12 injections?
I know this feeing too well. I am devastated because my recent appointment with my rheumy did not yield what I had hoped. Even with clear test results and obvious visible symptoms, the 80 year old man still did not give me a script for methotrexate. I need a new one and the soonest I can get in is two months away. He keeps saying I'm too young and he wants me off my pain meds so he can get a "true" idea of my symptoms! Are u kidding me? My meds are opioids and do not affect the actual symptoms, they just change the way my brain perceives the pain. I'm so frustrated. I can barely walk I'm in so much pain and when the pain is bearable, I'm too fatigued and weak to get out of bed. I'm 41 years old and I feel like all of my good years are behind me. The freezing cold weather doesn't help. I'm so sorry to hijack this post. I'm feeling very down and alone.
How about speaking to the NRAS helpline Kelly? You won't be telling them anything they haven't heard before.
I replied to your post & would strongly suggest you ask your partner to attend the appointment with you when you see your new one, it's sounding as though you really need the support. x
Kelly im 44 with the movement of an 80 year old, I miss the old me soooo much x
You can ask to change consultants - I did recently because my one was making bad mistakes with my treatment. What I did was to look at the consultants at my local hospital and was guided by someone who had experience there too. The one recommended does private consultations and so I booked to see him for just one session and then asked if I could transfer to his NHS list. This was reassuring which meant a lot to me. I dont really like private medicine at all, but I'd been given a lot of trouble by the previous doctor and have lost the best part of this year.
But changing doctors is a normal kind of thing but it does help to take advice.
I hope you find help and I'm sure that the right treatment will help you soon. Good luck
XC
I wish my dr would give them to me once a month! Here in the US they don't check levels and no amount of fatigue seems to budge them. I get it once every 3 months in my steroid injection. You'd think the stuff was a nasty narcotic the way they guard it. I take large doses of the tablets between but they don't help like the shots. I also found a supplement type product by Naturally Terry called 12 hour energy that helps a bit. I hope you get some relief soon. I know too well the feeling you have. I used to be always on the go and a hard worker at everything. The fatigue is worse than the pain. Good luck to you.
If you read up on steroids I think you'll understand why they don't use them unless necessary Deb, particularly with you needing to use them orally once they've worn off, if I've got that right. I don't think it's that frequent here in the UK because they are very helpful in reducing inflammation quickly but not a good idea using them long term which of course your team will appreciate. It sounds as though asking if med review would be the better plan, needing regular injections as well as taking large dose tablets between it sounds like your condition isn't responding to your mix of meds. Really feel for you, please see if your Rheumy has the same concerns, don't suffer more than you need to. x
The steroids I don't care about---I just want the B12! I've tried to get it without the steroids and neither of my drs will oblige.
Hi
I was just wondering why you have b12 shots with your steroid? Is this something that's done in the us or do you have pernicious anaemia? If you have pa then tablets won't help because the problem is that your body can't use the b12 you take in.....in food,tabs etc, so the only way to get it is through injection.
I think nmh is thinking you have steroids by injection and tablets as well.
There is a site here for sufferers of pa and I seem to remember they too were wondering why they couldn't have injections more frequently. X
No I don't have p. Anemia. I believe it is just the protocol here in the US to give B12 with the steroid to battle the fatigue.
Hi Jackie .. could it be the meds giving you a side effect of being tired? My opiate pain patches (Fentanyl) make me very tired but think that stress tires me a lot .. if I have a busy schedule ... and lately I have had more mobility so have been out more/done more, then when I hit the sofa at home .. it's Zzzzz's all the way! My husband says I am guaranteed to nod off as soon as he puts a DVD on! I think we often do a lot more than we give ourselves credit for. I was out for the hairdresser, then Christmas shopping then supermarket shopping on saturday and felt jiggered once home but my OH said he felt equally the same so thought I had done well to last all that! I did have three coffee/tea stops though. My iron levels are the best they have been and are normal. I have cut carbs a bit but not cut them out. I eat lots of vitamins .. lots of fruit especially and protein. I am treating us to Nutra-Ninja blender so we can make even more fruity things and also our own soups. Hopefully will have more zing/energy with those. Hope you feel more energised soon. We could do with a few Duracell batteries! NK x
RA is caused by a over active immune system that causes damage to the associated joints.
Therefore feel tired on occasions. washed out
BOB
RA is caused by a over active immune system that causes damage to the associated joints.
Therefore feel tired on occasions. washed out
BOB
RA is caused by a over active immune system that causes damage to the associated joints.
Therefore feel tired on occasions. washed out
BOB
RA is caused by a over active immune system that causes damage to the associated joints.
Therefore feel tired on occasions. washed out
BOB
Bad tempered and very tired.
feeling tired and resentful
Tired,in pain no end in sight.
Tired on antibiotics- anybody else?
So tired and utterly fed up
