Low energy levels

[Mark_67]

I work full time and have had 4 days off work this year with low energy levels. I'm usually OK on Monday/Tuesday but by Wednesday evening I need to sleep when I get in from work. I walk to and from work and struggle to get over a railway footbridge because my legs get extremely tired. I'm always very groggy when I wake up.

I'm on Methotrexate injections (17.5) and recently started taking Amitrptyline which has improved my sleep. Moving my injection day gradually over the last couple of years has had no effect. The Rheumatology nurse isn't interested and my doctor just sends me for a blood test.

Has anybody been in a similar situation and been able to overcome this?

[AgedCrone]

How long have you been on Amitriptyline Mark?

I took it for a short while & felt tired all the time. I now only take it if I really feel I need to sleep .....I only took 10mg tablets,but I see some people are prescribed much higher doses.

I think insomnia sometimes gets to be a habit & I used to wake around 3am exhausted ...the Amitriptyline gave me a good nights sleep, but I was not quite with it the next morning & my mouth was so dry my tongue stuck to the roof of my mouth! Horrid feeling!

Why don't you ask your rheumatology nurse if there is a different med you could try?

I sometimes think the medics think if they knock us out we won't complain as much!

Hope you get some help!

AC

[Mark_67 in reply to AgedCrone]

I've only been on 10mg for a week. I was hoping that better sleep would help. I have a rheumatologist appointment in April so I will ask about other meds.

[AgedCrone in reply to Mark_67]

Phone your rheumatology nurse now......you'll be in a proper state by April! The nurse can assess the situation & prescribe something different.

I'm afraid you have to be very proactive with RA or you just get overlooked!

[andyswarbs]

Eat a bag of green salad leaves before any meal each day and watch your energy levels rise. For better results eat two bags of salad.

[Mark_67 in reply to andyswarbs]

I've just bought a big bag of spinach leaves. I'll give it a try.

[andyswarbs in reply to Mark_67]

Well done. Add some lemon juice to spinach to help the bio-availability.

[Mark_67 in reply to andyswarbs]

The lemon juice might help it go down easier. This morning I had to wash it down with glasses of water.

[andyswarbs in reply to Mark_67]

If you can tolerate apple or banana then blending is a great way to cram a load of greens with a touch of sweetness. To get a stronger hit then juicing and so removing the fibre helps. Try adding cucumber and/or celery.

Tastes will change so that what once might have seemed bitter soon develop into being very sweet. Adding (red) cabbage to a juice is an ultimate hit for pure plant goodness. But I would not recommend starting there unless you are really hard core.

[nomoreheels]

Are you thinking that you're working through the fatigue & by Wednesday evening you're unable to Mark? The thing is fatigue can be part & parcel of the disease but can also be a way of showing that you're not well enough controlled. Assuming your blood test isn't showing you're anaemic have you been tested for Vitamin D, or calcium? If either are low that could also not only account for your fatigue but also joint or 'bone' ache, if that can be related to your legs becoming so tired. If you're deficient in both that's easily remedied by taking supplements, I'm prescribed daily AdCal-D3.

Something else to think about is your amitriptyline, is your dose too high for you to cope with do you think? It's one of those meds not everyone can function properly if the dose is too high so reducing the dose may be all it takes, it's a try it & see type of med. Also, assuming the dose is beneficial it can take a while to time when to take it. I'm prescribed 25mg morning & 50mg evening. The morning dose is sorted, I take it at 8.15am & function well (though some may disagree!) but the evening dose took a few tries to get right. Take it too early & I fall asleep in the recliner until silly o'clock, too late & I have all on to come round enough to get out of bed to shower the next morning. I've now got it right & take it at 10 o'clock with the intention of going to bed at midnight though it's not always successful because I can suddenly fall asleep, no nodding then going off, I suppose to some degree it depends on how active I've been during the day! If we're going out for the evening I don't take it until we get home.... because I don't drink I'm the allocated driver so need my wits about me.

A few things to think about or bring up at your next Rheumy appointment maybe?

[Mark_67 in reply to nomoreheels]

Thanks for the reply. I have only been on Amitriptyline for one week. I was hoping that better sleep would help. My legs definitely get muscle ache and not bones.

[AgedCrone in reply to nomoreheels]

Crikey nmh...I was only on 10mg of Amyltriptaline & I was practically catatonic! How ever do you wake up after taking 75mg, each day?

I read the PIL & it has more side effects than any other meds I have heard of!

[nomoreheels in reply to AgedCrone]

Fine tuning when I take it helps. I'm pretty sure it also helped that I started on 10mg & titred up every month until I reached the dose which both helped the reason for it being prescribed & the amount I could function on. I saw my GP every month for a review as I also started Butrans patches at the same time so was I well monitored. The morning dose I went straight on to with no problem. I guess it helps that I tolerate meds generally though Kathy, amitriptyline sent my h loopy but he's terrible with most meds, suppose I'm fortunate! The only side effect I have seems to be a dry mouth, though I already had that thanks to a couple of other meds I take but using Biotène helps & having a mouth like the bottom of a parrot's cage helps me with my fluid intake too!

[Ali_H]

Are you taking folic acid?

Ali

[Mark_67 in reply to Ali_H]

Yes. 6 times a week.

[Gigi71]

Fatigue and tiredness seem to be par for the course with RA, note you also mention you took Amitriptyline two years ago, did you just stop taking it and restart again. For me this is the drug from hell, didn't help with pain or sleep and made me like a zombie the next day. We are all different as many people are fine with it. Maybe a good idea to ask your GP to send you for further blood tests re ferritin, b12 and possible under active thyroid as well as Vit D levels. All the best X

[Mark_67 in reply to Gigi71]

I definitely get better quality sleep with Amitriptyline but it hasn't improved the RA symptoms. The bloods have been done numerous times. The only thing that has ever been flagged is borderline-low Iron level.

[Gigi71 in reply to Mark_67]

It's also about finding the right cocktail of meds for you, do you take an anti inflammatory, I take Naproxen, which helps with pain, I know if I forget to take it. Have you looked into diet, I am on a low carb high fibre diet, low sugar, no processed foods also helps with energy levels. Although retired now, I did work for twenty years and you just have to learn to pace yourself, hard when you are young and want a life as well. It's a shame your rheumy nurse is so unhelpful as they can be invaluable. My rheumy also responds to a letter at times, as the wait to see them is so long, but you are at the mercy of the admin team then, getting the reply out to you. Write everything down for your next appointment. Wishing you all the best. X

[Mark_67 in reply to Gigi71]

I think the rheumy team aren't bothered by fatigue. There sole interest is joint inflammation. If I go to an appointment and my joints are fine they're happy. I am not showing any raised markers on my bloods which they interpret as being OK.

[Gigi71 in reply to Mark_67]

Most people who post on here have the same problem with tiredness and fatigue even those who's RA is controlled by meds, the meds have side effects, it seems you can't always win, so long as there aren't any underlying reasons then it's the RA. The rheumatologist's know this too. It's finding a balance for you. Take care.

[Stynk]

I would call your team. I had a similar issue on plaquil mtx and ritux. I also take lyrica for nerve pain.

I had to go for a four day week with a rest day on wed. Has made all the difference in the world. I can perform at work and be a wife and mother. Still I bed most night by 9.

Good luck!!!

[Mark_67 in reply to Stynk]

I am not able to reduce my hours at work but I am going to try getting to bed early. At the moment I do 10.30 but I am looking to bring that down to 9.00. I tried it a couple of weeks ago and I had a brilliant week.

[Mark_67]

I am taking Rivaroxaban every day to stop DVT's. I've just had a look at the side effects (leg weakness, numbness, headache, general feeling of tiredness or weakness, joint or muscle pain, lower back or side pain). I think I'll be calling the GP on Monday.

[Mark_67]

Update to my post from February. I stopped taking Rivaroxaban and moved onto Warfarin, despite my GP saying it was unlikely to work. It worked. I have all my old energy back and I don't want to sleep all day. I'm in the middle of my last module with the Open University and I have not gone into a huge flare-up this year. I had a flare up every year on Rivaroxaban, between February and June. Crucially, I haven't had any time off work since I changed back to Warfarin.