Tiredness and fatigue

Maturecheese

Hi all, Does this tiredness and fatigue go when they finally get my inflammation under control? As you might know by my previous posts my crp levels have been high constantly and they are trying Sulfasalazine as well as meth to try and control it. I currently tapering off steroids yet again (one more week on 5ml) but still have the fatigue. So does it go as it's a pain trying to get a full days work or chores done whilst fighting fatigue.

dreamdaisy

Not in my experience, my physical stamina is improving thanks to my work with the PT but it's nothing like I used to have. Whether that is due to ageing or arthritis I neither know or care, it is what it is.

Sadly those who are doing well on the meds don't tell us, probably because they've never had to find the forum because they are doing well, the upshot is that you're left with those who also struggle trying to encourage: I love the irony! DD

stickywicket

Well done for persevering with doing a full day's work.

These days, like DD, I'm never quite sure what's due to what. Certainly humidity is bad for my RA and everything is much more of an effort but I still think that once the meds are working the overwhelming fatigue improves. That's how it used to be for me. Nowadays I do get tired with the sheer physical effort of getting reluctant and worn out joints to work but that's different. I had a very brief taste of real fatigue after an op last October when the surgeon wanted me off the meds for 2-3 months.

So I'd say keep hoping but no promises.

Maturecheese

Sorry I haven't posted for a while, each time I've looked on here I haven't had my password handy. Anyway thanks for the replies both. Four days into the last week on pred (5mg) and so far not too bad but I'm not getting my hopes up as last time I did that I was wrong.

stickywicket

I think we all understand that. My fingers are crossed for you.

Maturecheese

Right then, steroids are now finished and I'm starting the week (Thursday on) on two Sulfasalazine in the morning and one at night. Next week full dose of two in the morning and two at night, 2 grams total. The thing is my fatigue is even worse, it's getting annoying and this morning when I got out of bed I had quite bad dizziness, this lasted 2 hours or more with nausea. All this on top of the stiffness which is coming back with a vengeance. I wish I could get in touch with the Rheumey and suggest that he ups the MTX to 25mg from 20 and stops or lowers the Sulfalazine. The trouble is it's around a month or more before I'm due to see him next.

dreamdaisy

I sound like a broken record but give it time, your body is having to adjust to strong medication and it can take a while for thing to settle. It sounds as though you are increasing the sulph correctly and another contributing factor to the tiredness could be that the disease is not yet under proper control. OA is, by comparison, so much straightforward than the auto-immune nonsense. DD

Maturecheese

Thanks DD I was just feeling a bit sorry for myself when I posted yesterday. Got up this morning at 7 and no dizziness so hopefully it was something else caused it , like the two cans of cold beer I drank that night . Rheumey has said I can drink alcohol in moderate amounts (up to 4 units) once or twice a week and I've no intention of abusing that after weaning myself off large amounts. The fatigue is a right pain though.

stickywicket

I'm glad you're feeling a bit better today Dizziness and nausea are horrible on their own but chuck in the pain and fatigue of arthritis and that's a nasty mix.

Yes, it could have been anything. We're all too ready to blame the disease and / or the meds for everything ill that happens to us though I do think, from what I remember, that sulph is noted for it in the early days. And the fatigue and tailing off pred are not going to help anything.

Don't you have a rheumatology helpline you could call at such times Maturecheese if it should happen again?

Inflexible

Maturecheese wrote:

Right then, steroids are now finished and I'm starting the week (Thursday on) on two Sulfasalazine in the morning and one at night. Next week full dose of two in the morning and two at night, 2 grams total. The thing is my fatigue is even worse, it's getting annoying and this morning when I got out of bed I had quite bad dizziness, this lasted 2 hours or more with nausea. All this on top of the stiffness which is coming back with a vengeance. I wish I could get in touch with the Rheumey and suggest that he ups the MTX to 25mg from 20 and stops or lowers the Sulfalazine. The trouble is it's around a month or more before I'm due to see him next.

MC, your medication pattern sounds very similar to mine. I started on sulfasalazine several weeks back and concur with the nausea and dizzyness, it's not pleasant. I am up at the four tablets per day level now (i.e. 1g) and just trying to live with it until it settles down. I also went up to to 25mg MTX for a while, but this just knocked the stuffing out of me, so my rheumatologist lowered the dose and started me on the sulf.

I understand how the tiredness and fatigue is affecting you, all I can say is that I have fought it and am more or less winning - my formula is to stay as active as possible, I still run around 40 miles a week, usually on the fells or trails that surround me. I also swim at least twice a week and this, coupled with a bit of cycling, keeps me fit and on top of the chronic fatigue. I've also started to use some of meditation techniques to combat the inevitable discomfort when running and cycling, that's been a great help.

Maturecheese

Sticky Thanks I haven't had the dizziness again thankfully although it's only been a couple of days so next time I have a drink I'll be looking out for it. Inflexy, I wish I could walk properly never mind run and I used to be gym regular for nearly 7 years. (although I was drinking too much), not as fit as yourself but insane crossfit sessions all the same. 4 tabs is 1 gram? Your tabs of Sulfasalazine must be 250mg, mine are 500mg so I guess I'm on double the dose. I am impressed you can do what you do if you have inflammation, how do you get away with it? I am just about coping with 9 holes of golf, three times a week. Surprised the MTX had that effect as I have got used to 20mg mtx, perhaps that extra 5 mg makes a difference and anyway we are all different. I guess I'll get used to the sulf as well but it had better work soon because the last thing I want is a biologic added as well.

Inflexible

MC,

I must apologise, I gave you misleading information - I'm on the same sulf dosage as you, my tablets are 500mg so 2g per day in total.

I don't really know how I manage to keep my physical activity levels high, like all arthritis sufferers I go through flares, pain and feeling generally unwell - but my underlying fitness is still there and I just want to maintain that. I have an armed forces background and being very active is embedded in my psyche, it would be hard for me to change that .... I suppose I tailor my activities to suit how I feel at any given time. Please don't misunderstand me, the days of me running 100 mile races are pretty much over and I have to manage my inflammation levels carefully, but whilie body and mind are capable, I'm not going to give up.

Maturecheese

Inflexible, Hats off to you for your commitment and your service. I wish I could be more active but alas I am still in the stage of treatment whereby the meds haven't stopped my inflammation at all or at least not much. Since stopping steroids last Thursday my knees have swollen somewhat and I had to stop golf Monday but I'll give it another try Wednesday. I'll persevere with these Sulfasalazine tabs for a while longer but if the side effects keep up they can come up with another solution. I am getting Ocular migraines regularly, they started before the Arthritis kicked in so might have been a sign and also a strange cramp like pain in my upper arms that comes on out of nowhere and lasts around 5 mins max. Anyway enough whinging I have to go get ready to take my daughter to the gym. (a bit gutting as I will just train her rather than doing anything myself)

stickywicket

You're not whinging. Really. Things are tough for you right now and well done for persevering as much as possible.

I hate to say this but I'm not sure of the value of golf right now. It does put a lot of strain on the knees with the twisting. Mr SW has OA in his hip and, from time to time, books a lesson with the course professional who shows him how to play without putting as much stress on the dodgy bits. This is very helpful and works until he gets carried away and reverts to normal so has to book another lesson. But it means he can still play without doing damage. His is just OA though.

Maturecheese

Update :

Saw a different Rheumey on my last appointment on Tuesday last. She did a similar examination routine as the last Dr but said after questioning me that I obviously respond better to oral steroids than muscular injections. I pointed out that the other Rheumey wasn't too fussed on me taking a lot of steroids but she took a different view. She then suggested draining my knees which I agreed to but for some reason she only drained one. When I asked why she said that the steroids injection she put into my only drained knee (which I wasn't aware she was going to do and found odd after our previous conversation regarding oral and muscular steroid intake) would work for both although how it will get fluid of my other knee I don't know. Odd to me as the other knee has nearly as much fluid on it as the drained one. My other disappointment was the fact that after suggesting that I could go onto oral steroids until the sulfasalazine kicked in she then proceeded to give my a steroid jab in the knee instead. This has caused the usual reaction to high dose steroids in that I have had around three hours sleep a night for the last 4 days. It has stopped the adverse reactions to sulfasalazine or maybe the reaction to inflammation which is something to be grateful for but I really feel she should have drained both knees.

I guess my gripe is I wish they wouldn't change your doctor as they are all different and you get used to one only to have to deal with a different outlook which just muddies the water. Moan over

stickywicket

I think most of us find it a bit difficult when we suddenly find ourselves with a different doc. I see, on the news, that patient outcomes are better if they can stick with the same one but that's a big 'if' in the current parlous state of the NHS. I guess we're lucky now just to see any doc at all. I have, though, sometimes found it very helpful to get a different perspective.

This one is clearly anxious about the amount of steroids you've been having and that's not a bad thing. I think (but am by no means sure) that oral steroids are a 'worse thing' than those given by injection even if the latter does seem to provide a higher dose.

I don't know whether or not it's true that the injection in one knee will help both. I can see that, with more steroids flowing round your blood stream, there would be a knock-on effect on the other knee and this might reduce the inflammation. However, my suspicious mind says that maybe hospital policy, in these straitened times, is one knee per patient per visit. Again, I could be wrong.

I do hope it helps, though, and that the sulf will soon be working at full blast.

Maturecheese

Thanks for the reply Sticky as I was on a moan. The impression she (the Doctor) gave me was that steroids were ok, it was the previous doctor that I had got used to that wasn't too fussed on me having long doses. Having said that she then went against what she said about me responding to oral steroids better and gave me a jab instead when she was draining the knee. I was a bit disappointed about that as I thought, great steroids until the sulf works. The one knee nonsense still puzzles me and the only non negative answer I can come up with is she was reducing the risk of infection by just doing one knee and not just getting me out as the waiting room was busier than normal.

The up side to it all is that the steroid injection has greatly reduced the under the weather feeling of dizziness and nausea with a downside, no more than 3-4 hours sleep for the last 5 nights. Oddly steroids have that effect on me, the higher the dose the more likely I won't sleep which is another reason oral doses would have been better. I probably would have been fine on 10mg. Ah well what is done is done now and I'll just have to get on with it but I will have to remember to be more insistent next time.

dreamdaisy

I don't recall ever having both knees done at the same time and as for the steroid just walking out of the hospital immediately reduces the chances of it working. This is the kind of thing that is rarely explained to a patient who, due to stress, may not even think to ask. Knee-draining was the one thing that could make me run for the hills. I've had some very bad ones, the best was where I had swilled 50mls of oromorph (under medical supervision) fifteen minutes before. That one was fun!

The theory behind the steroid injected directly into the site is that it will be more effective that way but it never was, not for me. I hope you are resting the 'done' knee properly, my hospital advised 48 hours bed-rest so I always did. Utterly pointless. The only jab that worked was one for the OA in my right ankle, 48 hours of bed-rest led to three months of bliss then it all came back. Utterly pointless.

Steroids pep up the whole system, the really big doses can lead to an almost manic state where painting ceilings at 3am is a breeze and considered an entirely reasonable activity. I've just totted up my sleep total for last night, 3 and 3/4 hours split into five sessions of light dozing, all without the aid of steroids. Well done me! DD

Maturecheese

DD The last time I had my knees drained by the other Rheumey he did both knees which makes sense to me. The jab is still working 5 days later but I would have preferred oral steroids although the knee that wasn't drained is aching more. So far the draining procedure hasn't been too bad, a little uncomfortable that's all. I guess the downside to this jab will be when it starts to wear off, I will get more sleep but also more pain and unwellness unless of course these sulfy tablets actually work

dreamdaisy

As with all things medical we are at the mercy of the rheumatologist's preference. Oral steroids affect the whole body but I completely understand their appeal. Take a drug that actually improves the situation? What kind of madness is that?

I was given oral pred at a time when things had gone badly wrong and I was off everything. I remember my rheumatologist telling me I would feel better within two hours of the first dose, by then I was getting accustomed to her medical fibs and outright lies so expected nothing and was amazed when this actually came true. There and then I became a pred-head, to feel so much better so quickly was what I had been wanting and what nothing else had delivered. Seductive little beasts.

I think there are two professions where the lay-person thinks they know more / better than the practitioner: medicine and teaching. I became inured to parents telling me how to do my job whereas I would never dream of telling a banker, surgeon, TV executive, shelf-filler, docker etc. how to do theirs because I've never done that work. I think it's because the majority have been to school and been ill so maybe they think they are qualified to comment because their lives have been touched in this way. I question my docs all the time to develop my learning and maybe broaden theirs when it comes to responding to patients. It is very easy to forget that what is run-of-the-mill to them is anything but to the person they are treating.

Strangers are also very willing to comment on my arthritis and tell me stupid things to do because they think they know what it involves. Dimwits one and all. Would they tell a cancer patient to drink more water or eat nothing but turmeric for six months? Would they tell someone with Parkinson's to stop taking the docs medicines and try eating nothing but fresh vegetables? No, but when I'm told that Granny (oddly it's always granny, never grandad or someone under the age of 70) got better after drinking cider vinegar one can only think that Granny wasn't doing arthritis properly. DD

dreamdaisy

The flare is done until the next time but the heat is causing extreme lethargy, increased pain, reduced sleep quality from poor to abysmal and I have a heat rash which is stubbornly refusing to clear away, I am on my second tube of chemist-recommended Canestan. The harvest is happening here-and-there too which is adding to the general malaise. I intensely dislike the vagaries of my immune system. DD

Poppydog

Hi - I've only just joined the group and this is my first post. I have moved onto the Biological treatments after 5 months of being dreadfully ill with the side effects of Azathioprine. A couple of months in and I am suffering terribly with fatigue. For 3 days I could barely get off the sofa for more than an hour and it varies from day to day but at some point during every day I feel dreadful. I'm interested in views on how you can possibly work through this because it's driving me mad but I simply cannot stay upright! Is this likely to pass because it's not giving up any time soon by the looks of it.

[Deleted User]

Hi poppydog
welcome to the community it is lovely to have you join us. I am sorry to hear you are having such a rough time with fatigue, you have described it very well, it is exhausting. Most of us find that fatigue does wax and wane so do not despair. Here is a link to a section on our website which talks about fatigue. https://www.arthritiscare.org.uk/living-with-arthritis/fatigue
I hope you find it useful. I am sure our members will also be along to share their experience and ways of dealing with fatigue. Please ask as many questions as you like and keep us up to date with how you are getting on
Best Wishes
Sharon

dreamdaisy

Fatigue is something we understand, it can be utterly draining unlike the pleasant tiredness that comes from being active. I am having a tough time with it at the moment thanks to the heat, despite the immuno-suppressants the disease can still have a nip at me every now and again when my body is under siege. Then come the autumn, winter and spring my OA makes its presence felt, making me tired in a different way.

My answer to it is to do a little then rest a little: I am typing this after having a shower so time for a breather! Next I shall strip the bed and then have another sit-down. I am in the fortunate position of being retired (I am 59) so can plan my day to suit how I am feeling. My husband is a great support but, tempting though it is to leave everything to him, I still I want to do things for myself to prove I can.

I hope you feel better and brighter soon. DD

stickywicket

Hello and welcome from me too

I think we all understand all too well about fatigue. As DD says, pacing oneself is essential. Like her, I build rest periods into my daily routine and was shattered a couple of weeks ago when, having friends staying for a few days, that became very difficult.

Sometimes, though, fatigue can be an indication that the meds aren't working as well as they might. Did you have to have a period off meds completely to get the azathioprine out of your system before starting on the biologic? If so, your biologic (Which one is it?) might not be fully working yet. What do your blood tests show re inflammation?

BettyMac

Hi Maturecheese

We’re all so very different in how this disease affects us but I definitely have less fatigue when the inflammation is properly under control.

Several nasty flares over the last year meant I was constantly exhausted and a bit depressed.
Thankfully, fingers crossed, things have settled down again with the new drugs and I’m feeling more like my old self.
Watch out world!


I hope things improve for you too.