Help with fatigue please and managing ra in general ?

[cpr02]

Hi

I've recently been diagnosed in October and was looking for a bit of support

I'm lucky in that I'm mainly pain free due to methotrexate however I now appear to have developed other symptoms that I'm assuming is due to medication/ the condition

Sickness..... I take folic acid however feel very nauseated for at least 2-3 days after in the future I may be looking at injections to help with this

Fatigue...... I constantly feel tired too the extreme ! I'm actually scared to take my methotrexate tomorrow as last weekend it made me sleep for most of the day and I have to work a full shift all I'm currently doing is working and mainly resting I have read up on the 4 ps etc and saving energy but there doesn't seem to be any other way to save energy just now ! ? I'm to be referred to an occupational therapist I mentioned the tiredness at my last appointment but was basically advised its part of the condition

Work ........ I work shifts and love my job however am loosing motivation and quickly feel burnt out I plan on having a discussion with my line manager on Monday about reducing my hours but will only be able to do this very slightly in order to survive financially

Social life ......... I really feel I don't have one ! My last blood results came back out with range and I was asked about my alcohol consumption however I really have kept to what they advised (or thought I had !)

Mood / healthy diet / weight ...... Understandable my mood has started to dip I have struggled with depression in the past and my fear would be the way things are would lead to this again

I'm also struggling with being told I need to be a healthy weight/ have a very healthy diet I'm too tired most days to prepare food however also have struggled with food issues / disordered eating so worry my definition of a "healthy diet" might not match other people's

I have also noticed every appointment I appear to be weighed does anyone know why this is ?

Thank you for any support or suggestions anyone can give xxx

[helixhelix]

Hello, and welcome.

Three months is a very short time in RA world, and if the methotrexate seems to be working already you are doing well. I found that the initial nausea wore off after several months, but moving to injections can certainly help. As can taking folic acid six days a week.

But if it does ‘t ease talk to your docs about changing drugs. There are others.

Looking after yourself with a good diet, proper sleep, managing stress and exercise is important. It’s hard, particularly at the beginning, and many of us find it difficult to come to terms with being diagnosed. A healthy diet to me is lots of fruit, veg and fish. And very little fatty and sugary food, and no heavily processed food. You are weighed because rapid weight loss can be a sign that things are not well, and being overweight is something that many rheumies will mention as it really isn’t good with RA.

As for alcohol. When I was diagnosed I stopped drinking alcohol completely for the first few months, and when I was sure my blood tests were stable I gradually started having a drink here and there. Now I have one or two drinks maybe 3 nights a week with no problem. The recommended 14 units is really not much at all - no more than one pint of weak lager or one glass of not strong wine a day. In your place I would stop completely for a while as otherwise no way of telling what is messing up your blood tests.

So don’t beat yourself up for feeling low. But equally don’t panic that this is the way it will always be. You are at a very early stage and it’s a lot to take on.

[cpr02 in reply to helixhelix]

Thank you for your reply unfortunately rapid weight loss is never something I have had an issue with

Maybe on reflection two months is too short a period of time to reintroduce alcohol.... I think I will stop completely for a little while if it's ok to ask how long did you not drink for ?

Thanks for taking the time to write a response xx

[Hidden in reply to cpr02]

I stopped for eight months to see if it would make any difference. Now I drink a glass of wine late afternoon for the pain and it really helps. Also use THC/CBD in large doses which really helps a lot. Not allowed any nsaids for a few weeks before tests.

[stbernhard]

Helix , as usual, gives you very good help and advice. The NRAS website has some very good publications on "New2RA" which helps you understand RA better and "Living better with RA" which is a guide to self management. I know you have so much to deal and cope with right now, so you maybe don't have the time and energy to read booklets. If and when you feel you have time, read them it is worth it. All the best.

[cpr02 in reply to stbernhard]

Hi I will definitely have a look thank you for taking the time to write a response xx

[AgedCrone]

All I can say is hang on in there....having only been diagnosed in October it does take time for any Dmard to reach its optimum effect....for most people it can take at least 6 months. I do know that will feel like six years to you right now .....but your feelings are quite normal.

When do you take your Mtx? Have you tried taking it after dinner...I’m a firm believer in the “sleeping through” any side effects ....& do you take Folic Acid every day except Mtx day?

You say you are “scared” to take your next dose.....well anxiety can bring on nausea...so try to talk out why it scares you so much with your rheumy nurse......many people are controlled well on Mtx for years.

At your early stage of taking Mtx there is nothing wrong with sleeping all day........I do know it’s a shock to the system not being able to continue life as you knew it, for a few months...and it’s a good idea to drop a few hours at work until you are dealing better with the fatigue. Try to pick up or

print off some of the NRAS leaflets to show your line manager - the average man in the street has no idea how seriously RA/RD can affect your life in the initial stages.

When you say you are constantly being told about health/weight ....are you a lot over/under weight? I think we all go through stages of being “too tired to bother” preparing food....but all we can do is try...I don’t think there is any magic formula....but try not to rely on takeaway type food......eat more fruit as a snack rather than starchy buns. In the early stages of Mtx I think alcohol is best avoided, at least until the nausea is controlled.....I always managed to have a daily glass of wine .......& as long as my blood tests were fine my rheumatologist was happy with that.

I am 20+ years diagnosed & I am still weighed at every Rheumy check up....so I presume that is normal & it did point out when I lost a large amount of weight on a drug that appeared to be suiting me – but wasn’t!

Unfortunately at your stage after diagnosis it’s a waiting game....you say you are virtually pain free with the methotrexate .......so at least it is working which is a great bonus ...so now comes the really hard part of accepting that until you can take your drugs without the side effects, & you can pace yourself to deal with the fatigue.... life will be a bit slower than before.....I know you probably feel “why me?......everybody here felt that...but most of us now lead good lives........I hope you start to feel better soon.....but if you feel you really can’t get on with Mtx......even if you change to injections ....tell your Rheumy nurse .....don’t suffer unnecessarily......there are plenty of other Dmards to try.

I really hope things start to look up for you very soon.

[cpr02 in reply to AgedCrone]

Hi

Sorry what's dmrd ?disease modifying... I'm lost after that

I take methotrexate today .... I have never thought of taking it in the evening but will definitely give that a try thank you I do take folic acid every day apart from when I take it

Re work thanks unfortunately I'm new to the post and were in the middle of a staffing crisis .... I know it will be different for everyone but any idea how long I should anticipate the fatigue to last for ?

I think I would struggle re being weighed every appointment and am wondering if it could be every second one ... I doubt very much I will experience any rapid weight loss !

Unfortunately I am I pain today and have had to call in sick re the pacing thing maybe I need to get better at it ? .... but I don't know what else I can not do .... I'm currently doing very little to cause the tiredness ! I think I'm also concerned that changing meds would cause pain to return

Thank you very much for taking the time to reply xx

[AgedCrone in reply to cpr02]

Hi.....Dmards are Disease Modifying Anti Rheumatic Drugs....the ones that protect your joints...... but don’t rush to ditch the Mtx too soon... Unless you are really in dire straits I would definitely try to give it six months.

Swapping drugs every few months doesn’t seem to bring relief any faster.

At the moment you are obviously very anxious, and with RA , stress is a major cause of flares.

Try taking the MTX with loads of water after dinner ......that worked like a dream .....but for me.....it could for you too...but no guarantees.

Regarding the fatigue ......I find it comes and goes for no reason whatsoever. I can have a really good night’s sleep....have a cup of tea and have to go back to bed for a few hours ..... then that passes and I seem fairly normal again. I think it must be different for everybody. You don’t need to do anything in particular to cause it .....with RA it just happens..... No rheumatologist has ever been able to tell me why.....although I was found to be deficient in vitamin D and when that was sorted out things did seem to improve.

I’m afraid it’s part of the regular RA checks to be weighed at Rheumy appointments.....-the rheumatologist never remarks upon it but it’s needed for the record.

If you have a weight problem and it really bothers you ...speak to your GP about seeing a dietician or go to one of the well known weight control companies that many people here who have weight problems have used.

Weight can be a problem with RA when you can’t exercise..... but trying to stick to a healthy diet is I guess all you can try to do.... Try not to become fixated on it.... I do know that is easy to say when you don’t have any weight problems but looking at it from an outsider‘s point of view, if you are too anxious about your weight that stress can cause the fatigue, or any other RA symptom.

You said you were in pain today-I remember when I was first diagnosed it was very tempting just to lay there with your hot water bottle but if you can possibly bring yourself to move about and keep your joints moving that really does help.

Things really will get better but at their own pace ....there is no hurrying RA. It sounds as if your workplace is in a bit of a flurry at the moment so I guess taking a whole week off is out of the question? But that might really help you settle on the drugs ....if you could just go to bed for a week knowing that you don’t HAVE to get up at a certain time in the morning.. You could get a more relaxed sleep? Not very Scientific but I know if I have to get up at 6am I usually only fall asleep at 4:30 am which of course is worse than nothing!

Keep calm...things will eventually settle down.

[RosieA]

Helix has given you some good adivce. I can only add a little more as also recently diagnosed.

I was also diagnosed in October and yes the fatique can be over whelming. Pace seems to be the key word and choosing the correct food will help. Fruit is becomming my easy convience food as are nuts. Instead of reaching for the chocs or biscuits I have prepared little alternative snack boxes. Just a thought.

Yes, they do weigh you at every session, please don't worry, it's all part of being carefully monitored.

Occupational health may be able to give you ideas for managing daily / work life. I am glad you are going to talk to your manager. It is important to get as much support as possible. (Have you given them the NRAS guidance etc) Is there any chance to work regular hours at this juncture (your boby is going through a lot at the moment) it might help.

I went straight to MTX injections (have a problem with fainting if going to be sick) and although tired for a day or two I have experienced no other side effects.

I have also just started a strength and conditioning programme run by the physios at the hospital, especially for people with RA - maybe ask if yours do something similar. I do feel better after some form of exercise. Find something you love perhaps.

I too feel like life is on hold, stopped doing all the things I loved but am just beginning to think about picking some of them up again - so there is light at the end of the tunnel - it just takes a while to get there. Hope that helps in some small way.

[cpr02 in reply to RosieA]

Hi I haven't given them the guidance (my manager) however as someone who works in the caring profession I'm hoping it won't be an issue..... I'm not sure if there would be a chance to work regular hours

I have lots of exercise I love and like the gym and especially running however am too tired to do any of this currently

Thank you for taking the time to reply xx

[RosieA in reply to cpr02]

I know what you mean about exercise. Used to do 11 hours a week but now do gentle stretching and walking. Miss what I used to do but hoping I can get back to some form of what I love and hope you do too. It is such a viscious circle.

[Sockknitter]

Hi cpr02, I just wanted to add a little of my experience. I had terrible tiredness too. My GP practice nurse suggested that I could be vitamin deficient caused by the mix of drugs and the disease itself. I asked my Rheumie who agreed to blood tests. I was borderline low for B12. She felt it wasn't low enough for an injection but agreed a course of tablets. They did help, nothing miraculous but definitely felt more awake. I still take them 1 year on.

Also wanted to say that it's OK not to feel great just now. Be kind to yourself.

[Hidden]

Hi cpr02

We can all associate with everything you’ve said.last year was my worst RD really spiralled out of control. Like you love exercise really made up for a large part if my social life. Fatigue and mobility problems dominated the whole of last year. Barely exercise or even walk the dog.i reduced my working hours . I’ve a good sense of humour and can laugh at myself but started to struggle towards the end of the year. Trying new meds and this week starting to feel better in myself still a long way to go. So determined this year will be different. I know fatigue means my disease is active. So many people get there eventually it’s trial and error with the meds and I have really had to push with my Rheumatologist not to be left in limbo. Allergic to one set of meds and was told they would review at next appointment (4 months time) I wasn’t prepared to wait and I started a biologic within 4 weeks bit early to tell yet but I’m hopeful it works.

As I said I reduced my working hours and applied for Pip. Had to fight for it but worth it in the end and has taken the stress off financially. Might be worth applying.

Keep pushing with your Rheumatologist . So many success stories on here we will also be one of them it’s just gonna take time.

Hope things improve