Two questions re insomnia and exercise

Mat48

Two questions re RA/ IA. I am now down on a lower dose of Metoject - 12.5mg having tried two other DMARDs and failed one and scary reaction to the other. I look after myself very well re diet and daily exercise but am getting some soreness, stiffness and ache at night - mainly in feet and wrists. I believe I also have OA although this hasn't been confirmed by a doctor yet and the pain isn't excruciating - but it is waking me up and my feet and wrists throb a lot. I think I stay awake with this low level pain for hours and subconsciously maybe I fear falling asleep in case when I wake I'm in full flare. I haven't really had a full flare for a year but my wrists and hands flared in April so I know what real pain is. I just can't quite identify this pain in so many places because its more subtle and neuralgia like. When I wake my feet are very sore from the toes to Achilles' tendons and its hard to walk initially. I'm finding getting going with exercise a bit harder each day despite being reasonably fit and the usual Zumba is hurting my ankles and knees.

My questions are - does this night waking and subtle pain sound like my RA is coming back a bit or is it more likely to be OA or just all in my head?

Second question - will the aerobic/ dance exercising be harming my joints if its a bit sore as I move about? They don't appear swollen or hot and I'm scared if I don't keep using them I'll lose them or become fatter again - or both!

Ps and I may be imagining this but I think I'm less stiff the day after injecting and then it gradually worsens until by day 6 I'm really stiff and achy all day. Surely a systemic medicine like methotrexate wouldn't work like this?

stickywicket

Mat48 wrote:

I think I stay awake with this low level pain for hours and subconsciously maybe I fear falling asleep in case when I wake I'm in full flare.

We all have to deal with this arthritic rubbish in our own ways, Matt. Mine has always been to ignore everything as much as possible then deal with stuff when I can't avoid it.

I've never bothered distinguishing between RA pain and OA pain. In fact, I didn't know I had OA until I was told I needed TKRs and I said I thought they were for OA and the consultant said I had that too.

Your way will be your way, not mine but the only time I ever lie awake with pain is when I've taken all the dullers I can and they haven't worked and I've brewed up and distracted myself for a bit and that hasn't worked either. I really don't think that fear of sleeping lest one wakes with a full flare is a good thing to do. I'm sure the tension involved must be detrimental to the joints and the lack of sleep and anxiety detrimental both to joints and emotions.

As for the dancing - I'm not sure. Zumba and other dancing hasn't featured in my life for too many years. It sounds high impact which mightn't be good. I'd check with the professionals.

Mat48

Thanks for responding SW. I've been so preoccupied by other stuff - work, family and singing hobby that I hadn't noticed this particular ache really but suddenly became aware that it was waking me and making me rather distracted and grumpy. I have't taken pain meds for ages - generally only if I flare up or have a headache or something specific. I find that taking one Amitriptyline early in the night usually helps but now its overriding this a bit too and I don't want to take more as it wipes me out a bit the next day.

I don't mean that I lie awake dreading flares - I mean that somewhere burried in my inner thoughts is a fear that I might jam up as I've done in the past so that, without even clicking that I'm doing so - I move around all the time and unwittingly wake myself up?

I realise I'm very fortunate to be able to do Zumba and Wii fit and walk the dogs in the first place, but it does take perseverance and is become increasingly hard. I'm not sure whether to fight this and make myself exercise even when I'm stiff. I did speak to a physio when I was thinking of starting Zumba and she said it should be fine and if it wasn't I would know! Xx

DebbieT

Hi Mat,

Have you used paracetamol daily to keep you going? It may be worth a try coz I've been told it's my staple pain killer as coco's make me feel spaced out & don't help the pain/stiffness at all. It may suit you better. Could be worth a chat with the female GP that seems much more on the ball. I also find tramadol slow release is better than coco, it metabolizes much better for me.x

Mat48

Thanks Debbie. I'm nervous of all pain meds because I have an ulcer. actually I've just been at a lunch party and a woman and I got talking about the fact that neither of us can smell anything at all these days. We established that both of us are hypothyroid and she has seen a private endo who comes to Aberdeen. He says its all T3 deficiency and she's now on T3 supplements and says all her aches and mild joint pain and morning stiffness have gone. I'm thinking of seeing him too as I'd prefer to get to the root cause of this aching and stiffness than add in more drugs if I can. Its really made me wonder I must say. I will talk the the woman GP when I get my monthly bloods done first thing tomorrow. Mat xx

Boomer13

Hello Mat;

While I'm sooo envious of your ability to excerise and I hate to suggest it, but why not just cut back a little on the exercise and try some hot soaks for the stiffness for a few days and see if it settles down? I'm not sure if it's RA or an enthesitis problem you have but I have read that RA can weaken your tendons/ligaments too, so maybe your body is having difficulty recovering from the level of exercise you are doing now?

My problems are enthesis-related joint disease and is really aggravated by exercise. When I was able to exercise it was taking me ~3 days to recover from a tai chi class or a longish swim. It felt like tendinitis-type pain with stiffness and the telltale heavy fatigue when I'd over-done it. At night like you, I would toss and turn with crampy muscles and achiness. As I've graduated now to more severe joint pain, I'm not exercising more than two 10 min walks/day. I still can't believe that exercise affects me so badly, but there it is.

Given my history and the type of problem I have, I want to tell you to take it a bit easier and see how you feel, but this may not be appropriate for your problems. I'd discuss it with your GP and physio. Inflammation can build up in your body so if you're not recovering well from exercise, you may be provoking more inflammation than your body can deal with. You don't want a full-on flare. Exercise is excellent, but it is still is a source of stress. And, if you're not sleeping well either you are definitely setting yourself up for a flare.

Take care,

Anna

Boomer13

Or, Mat, you could try moving your exercise routine to the swimming pool and see if lower impact on your joints helps.

Mat48 wrote:

I'm not sure whether to fight this and make myself exercise even when I'm stiff. I did speak to a physio when I was thinking of starting Zumba and she said it should be fine and if it wasn't I would know! Xx

I think your body is trying to tell you something.....

xxAnna

Mat48

Thanks a lot Anna that's really helpful. I suppose I've become very superstitious about maintaining my daily exercise routine because two years ago, when RA first struck, I was four stone heavier than I am now (still a bit overweight but far from obese at least) and I blamed myself for all my health problems.

So I started excercising everyday on the Nintendo Wii. Walking the dogs and doing 30 mins Wii fit plus daily got me so much fitter and healthier and I them associated lack of exercise with worsening of pain and stiffness. If I don't move a lot I seem to lock and find it really hard to get joints loose again. But I think you are probably right - although I only do more rigorous exercise on the thick carpet and avoid anything that involves my wrists or hands. This is kind of flu like and it does seem to be coinciding with lowering of methotrexate but it doesn't feel extreme enough to tarry with my previous experience of RA. I will speak to my GP about it tomorrow.

Re the swimming suggestion - oh heck I hate chlorine - years of eczema put me off the pool but I'll think about it - many thanks! Mat x

Mat48

Just an update to my updated update :roll:

I went to see the GP this morning for my usual blood tests. I explained about low level aches and pains and stiffness that I wasn't sure I was imagining or actually feeling (I have a strangely high pain threshold). She said she would take my ESR too as I'm having my DAS done in a month with the possibility of taking an anti-tnf.

I met someone at a party yesterday who noticed me hobbling and who shares my inability to smell anything these days. We established that we are both hypothyroid - she was very preoccupied with this bit I'm not. She persuaded me to ask my GP about my T3 levels and whether that could be causing trouble in my ankles, knees and wrists now - and wake me in the night. GP got a bit short and said no and told me she wasn't going to take my T3 (hormone they don't normally test for routinely here) when I have a diagnosis of RA and am down to only 12.5 Metoject now.

So I hastily withdrew this whole line of thinking and explained what a DAS was to her. She's great but very much a generalist at her own admission.

Anyway the upshot was that in the middle of Murray's tennis match today she phoned to say that my liver, white blood cells etc are all fine but my ESR has risen from 28 a few weeks ago to 44 - which she thinks confirms her suggestion that aches and stiffness are active RA. So that's me told and I've laid off exercise for a few days now so I don't do damage.

stickywicket

The picture does seem a bit clearer now, doesn't it, Matt? As for the lack of smell - I don't know when, where or how mine went - sometime in the last year or two - but I just put it down to meds. I never thought of thyroid problems and don't intend to now I hope easing up on the exercise will help.

dreamdaisy

GPs are just that, general practitioners. They know a little about a lot, it's the specialists that know a lot about a little. I remember when I used to exercise that I would be laid up for about 48 hours after with a grossly swollen knee or knees. Now I'm just laid up. Do what you can do and always stop when you feel you can do more. Be wary of pushing your body too hard, there's not much to gain and possibly a deal to lose. DD

Mat48

Sorry I was unable to reply because I couldn't login? I got a new login password finally but this didn't help. But now here I finally am - with some dreadfully long password which I haven't a clue how to change. I will set to with this task in a moment.

My GP is wonderful - well both my GPs are actually but the woman especially. But she calls herself a generalist quite happily.

I don't think I'm in either of your leagues in terms of my RA but my efforts go into deterring it from taking hold of me and doing damage - rather than resigning myself to things fusing and eroding - since I'm fortunate enough to be unscathed by my RA as yet anywhere apart from my hands - which are a little deviated, stiff and swollen always.

I'm still exercising but moderating it to low impact and more gentle stretching and abdominal stuff than anything too rigorous. Thanks to you both. Mat xx

dreamdaisy

AC recently changed their URL, this could be the cause of your logging-in troubles (some others have been affected).

Of course you don't want it to take hold and yes, I am much further down the arthritic highway than you, so it is different for me. I don't think you meant to imply that I've sat around resigning myself to erosion and fusing - in fact I've gone the other way and have been very busy growing extra bone! Arthritis of any type is a progressive disease and it will do what it wants to do. Everyone's version of their type is unique to them and I hope that for you it won't get too much worse. I think it's true to say, however, that we exercise no control over this aspect of our lives. Canute and the tide spring to mind. DD

Mat48

Of course I didn't mean to imply that either you or SW sat around fusing DD, hopefully you know me a little better than that by now? I just meant, exactly as you suggest, that you are further down the arthritic road than I am.

It always feels terribly tactless mentioning that I do Zumba, long dog walks and other exercises on here - but I also think its important so that people who are even less far down the arthritis road can feel less fearful about exercise in general and also about what the drugs we are put on can help us to do again.

Not all of us of course - some will have arthritis more aggressively than others. But until now my RA has been as much systemic as arthritic - more perhaps. So stiffness, pins and needle outbreaks and deep heat and fatigue/ flu like aches and tendonitis have all been as much of an issue for me as joint pain. When I get pain its like I've been bashed with a sledgehammer but thankfully it is rare these days and comes and goes very suddenly with NSAIDs.

I have checked all of my exercises out with my physio I'm relation to my lumbar degeneration, drifting fingers, sore wrists and cranky knees too. This is important because physios understand far more than I do what can do harm! I agree about Canute but I also think having a wet suit, life jackey and a paddle boat are the equivalent in good muscles and being prepared. Heck I sound like a brownie guide leader!?

dreamdaisy

Tactless mentioning what you are able to do? Far from it, it's your reality but it may be worth reminding people every now and again that your RA is not as widespread as that of others, you don't come on here too often and newer people will not be aware of your history. And I apologise, :oops: I guess I am being a little over-sesitive at the moment but given all that's gone on in the past few months I guess that's a sign that I'm not coping as well as I'd like. Add in the grated thumb (and now a bruised foot where I dropped a stainless steel steamer on it this morning) and life is generally raw. I wish I was dropping the crockery as I want a new dinner service but cannot justify one at the moment! DD

Mat48

So sorry to learn about all your recent mishaps/ disasters/ misfortunes DD. But I'm afraid I'm unrepentant about mentioning that I exercise daily on here. For me its been a very important way of keeping the disease at arm's length. I only do short work outs and I have continued to exercise gently through flares - but trying to keep the affected joints out of things as far as possible. I was asking people on here how we know how far to push it - if they are able to push it at all or even slightly.

Perhaps I should add at this pint that I have a very high pain threshold and rarely show any swelling (although apparently I do have quite a lot) so I find it very difficult to know whether I'm damaging myself or not. But I do suffer from intense stiffness and this is very widespread just now - almost in every joint. So I can't truthfully say that my arthritis is only confined to a few joints because I don't think it is. That's not how my RA works.

As it happens the idea to take up Zumba (on a Nintendo Wii on the living room carpet - rather than in a hard floor with others far more supple and athletic than me) came from someone on a different forum who suffers from Systemic Lupus. Now I know lupus sufferers have dedicated forums but as a disease it does come under the banner of autoimmune arthritis and, although it can be mild - its hardly less severe than RA or PsA overall.

The way I see it is that this forum is for all those living with all forms of arthritis - mild or severe, inflammatory or mechanical. And exercise shouldn't be a taboo subject here because everyone will benefit from some form of exercise, whether its seated tai chi or Zumba - and I've made it very clear that this should be with support of your medical team - physios especially.

I don't think I have RA particularly mildly - at least not according to my doctors, but I think I'm in the early stages of it still and at this point weight reduction where necessary and keeping everything moving, muscle strengthening etc are all really important weapons to make use of in the battle with arthritis I feel. Having said that I've become aware that a couple of joggers of my acquaintance have had to quit now because they have developed.. Yes you guessed correctly..Arthritis!

And I'm not going wish you good luck dropping your crockery DD because you would probably break something far more important in the process.
Mat x