Hi Kathryn,

Nice to see you joining the forum, I am Lorna I have had RA for just over 3 years. It hit me so aggressively at the start, but because of this I was diagnosed super quick. I have been on the triple therapy and keep well now but it was dire in the beginning. I couldn't do very much at all. I do like you get tired if I do too much but I do try to remain positive have done since the start. It does make a difference.

Try taking your MTX at night and perhaps the symptoms will be better. How long have you had RA? It must be so difficult for you with 2 young children. You have to be careful for muscle wastage if you are in bed lots, I had muscle wastage in my thigh when I was unable to walk without difficulty. I was very weak too as I couldn't turn my head or use my right arm. I even had RA in my head and jaws, it was absolutely hell.

But I never let it beat me, find at which point in the day you feel slightly better and do a little then. and relax afterwards. It will make you feel good and try to do that each day, then you are in control NOT the RA. The more you lie down the weaker you will become. I know how you are feeling and it is very difficult to focus when you feel weak and in pain, but being positive WILL help.

Nice to chat keep posting and try to be strong.

Thinking about you Lorna x

Hi Kathryn

I am the same age as you and feel the same thing bout having RA and not wanting to give in or admit it to myself. Its pretty difficult to find ourselves in such a position at such a young age, more so if you have young children. I dont know if I will every fully accept it. When I feel good I can forget it and get on with my life and when RA starts impinging in my life eitehr psycologically or physically I can get quite low.

I dont know how long you have had RA but I have had mine since 2007 diagnosed 2008 and the fatigue was pretty bad and its only in the last 6 months that the fatigue has lessened and I feel a bit more normal. I totally understand your question about the scooter and shopping - as I would get wiped out before I even started shopping and would get quite stiff and just would want to go home. I thought of the axooter but didnt seriously consider it. However if I felt that it would improve my quality of life I would consider it.

Re your metx dosage do you take folic acid a couple of days later - as I think thats suppose to balance the effects more?

Take care

MW

Hi Lyn

I have always taken my methotrexate first thing in the morning. I've never thought about taking it at night time and I've no idea why! I do take Lansoprazole (I was taken them before all this started anyway) and folic acid twice a week a couple of days before and a couple of days after the MTX.

Because I've seen the rheumatologist so far as a private patient through my husband's work health policy, I have had the benefit of quick diagnosis and appointments but I haven't had access to a rheumatologist nurse which I think you get through the NHS. Anyway, my GP should now have referred me to him on the NHS so that I can have the MTX injections eventually, otherwise I would have had to pay about £80 a month for them privately.

I just assumed that other people with RA had the same level of fatigue as me but maybe this is not the case. How are you supposed to know? I just feel guilty at appearing so lazy which is probably silly because I'm not a lazy person by nature. You'll see by my reply to Lorna that I have made a timetable to try and stop myself from this 'boom and bust' attitude to doing things. Usually, I just do more when I feel up to it and less when I don't. At the moment though there are no good days so maybe that's another sign that something's not right either depression or the low sodium levels that showed up in my last bloods.

As far as walking goes, just general joint pain is well ... a pain at the moment. My big toes joints are getting more sore and my right big toe is numb from the 'knuckle' upwards. My ankles are always very stiff and hurt when I walk and my knees aren't great either - you should hear the grinding noises them make! The walking stick helps a lot and I always use one but at the moment my fingers and wrist joints are tender and so leaning on a stick isn't ideal. Maybe this is all temporary. I must be positive!

Kathryn
xx

Hi MW

It's so good to know that someone else out there feels like I do even though I wouldn't wish it on anyone else, if that makes sense!

I'm glad that you feel less fatigued now than you did. That gives me some hope, at least! I do take the folic acid a couple of days before and a couple of days after the MTX so it should be working to its full effect. In fact, a blood test I had showed whatever is appropriate for someone on a high level of folic acid supplement.

I hope you continue to be on the up!

Kathryn
xx

Hi Kathryn,

I read your reply back there and was tired just reading it. You deserve to lie down when you get the chance, what you are managing to do on a daily basis is amazing. I had 3 daughters and used to do as much running around as you as well as all the housework etc. I did not have RA then, you are positive and you are in control but you do need to pace yourself a little better.

Having children is exhausting, it's constant busy, busy they are always needing / wanting something. Give yourself a pat on the back you are doing really well. Depression is an illness in it's self and the tablets you are on make you tired. My daughter has a degree in Neuroscience and it was these tablets she studied on her course.

Getting RA is a mind blowing experience and you need to allow yourself to come to terms with it. Carry on putting your feet up , it's well deserved. You are a star and remember it.

Take care Lorna xx

Lorna what a lovely post - hear hear kathryn x

Hi Kathryn,

Reading the list of all that you do, and with young children to look after, it's no wonder you are exhausted! I think you are right and a visit to the doctor is the best thing, explain to him exactly how you are feeling.
It's hard keeping up with jobs in the house, I do like Lyn and spread the work out over the week, with a day of heavy jobs followed by a day of light jobs. You are on the right track with your timetable, but make sure you get plenty of rest periods.
I think with all you have to do for your family (and cooking for 6 each day is a mammoth task) you are like most women and are seriously lacking in "me" time, which doesn't help your depression.
Go easy on yourself and rest whenever you can, anyone without RA would find your routine exhausting!
I hope your doctor can help when you see him next week.

Love, Doreen xx

Hello Kathryn

I was diagnosed May 08, my symptoms started a few months before. I went private to see someone because my GP was useless and just wouldn't listen to me. I now see the consultant on the NHS and I have access to three specialist nurses, Pysios and OT's who specialise in RA. Have also been seen by ortoptics (hope I've spelt that right) and had inserts made for my shoes. All in all I am being looked after very well and have no complaints about my treatment.

I just potter about at home doing what I can when I want to do it. Both of my girls have left home so there is only me and hubby. I do go and see my youngest daughter sometimes (she lives in Gibraltar) and help with the grandchildren, I always come back so tired. I just don't know how you with small children cope with it all.

It sounds like you have a very active life with all of your comings and goings and you will really have to learn to 'pace' yourself. Easy said that done I know, if I am feeling alright I tend to do too much, which really isn't doing me any good at all.

I am not as good lately that I have been and I have been told that having MTX by injection may be the answer. I think I am going to go down that route. I don't get any side effect from taking it but the nurse told me that the only way that they can be 100% certain that the dose is actually getting into my system (I take 20mg) is to have it injected into me. She said that some of the dose may be lost if I take it orally, but if its inject then I get the full dose.

Take Care

Paula x

Hi Kathryn,

I`m so sorry you are feeling so low and tired at present. I really do think that the absolute bone-crushing fatigue that comes with RA is too often underestimated, and running around after a young family, with all that entails, seems to require a super-human effort. Also, I believe depression and RA are constant bed-fellows - someone likened it to being in mourning for the life you had, and I think that`s a very valid observation.

All the DMARDs take so many weeks to kick in, and have a beneficial effect, and we all want them - indeed need them - to work instantly. It is important to try and pace yourself, as if we do lots of things one day we invariably pay for it the next. I try to do a bit each day, but try not to beat myself up about it if I don`t.

I agree with Lyn, about seeing a podiatrist - I was able to get about with less pain once I got some proper insoles.

Re your question about the scooter : when I was diagnosed I was told my RA was very aggressive, and indeed things deteriorated rapidly. From being a very active person, I needed help with dressing, showering, everything, and I couldn`t walk much at all. We had a holiday in Ireland booked, and my rheumy told me to hire either a scooter or a wheelchair for the week. My morale had hit rock bottom, and she said I needed to get out and about. The scooter was great, though I refused to use it at home, as I felt everyone would look at me.We actually bought it cheaply from the hire shop, and eventually I used it on my worst days, rather than be stuck in the house. Once they found the right drug for me, I needed it less and less, but it still sits in the garage, and we still charge the battery, just in case.

Take care,

Kathleen C.xx

Dear All

I am really touched by all your replies here. It means so much to get a bit of encouragement from people who actually know what I'm going through. Of course, everyone at home is understanding but it's different because thankfully, they can't feel the pain.

Doreen, I suppose the 'me' time I do have is when everyone's at school or work and I'm not. The trouble is that I want to be doing something with my brain too and I want interaction with others too. Yesterday afternoon I sat (no, that was a lie, I was lying on the bed!) and completed an application form for the course I want to do which is one day a week. I know that this will be hard but at least it gives me something to look forward to and in the long term, could give me a career that works well on a very part-time basis (counselling). That's if they'll accept a limping lunatic like me ......

Lynn, what a great blog post. I wish we could post that up on the inside of our eyelids!

Paula, it sounds like we're in the same boat and we'll have to compare notes when we get the injections! I have got some orthotic insoles (not sure if that's the right word here either) on the recommendation of the physio. I have to confess to not wearing them though which is probably why they haven't worked Being a private patient, I've been like a ping-pong ball going back and forth between the rheumatologist and the GP asking for things because as I said earlier you don't get the automatic access to the other health care professionals. However, I have had hydrotherapy and physio although it sounds like a podiatrist could be my next request!

Julie, my last bloods didn't show anaemia, just the low sodium level which is something I'm definitely going to go to the GP about, even if the rheumatologist didn't think it significant. The same blood test showed an ESR of 75 but he was eager to put it down to an infection I'd had a couple of weeks earlier. I think that an up-to-date test would give a clearer picture.

Kathleen, yes it is like mourning, isn't it? It's almost as if the longer it goes on, though, and the distance between what is now and what was, it becomes more intense. I think that I will ask for counselling to help me with this. I was hoping I'd just get used to it on my own but clearly, this isn't happening! Thank you for the 'permission' to consider a scooter if I get to that point. Just knowing that someone else has had to go there helps, even if I don't actually get one. I have used a wheelchair a couple of times at a wildlife reserve so that I didn't hold everyone back when they were walking around because it was quite a long way. It wasn't that local so no one would see me. I would definitely consider one for our holiday days out if nothing else.

Barbara, you must be a real superwoman to be working as a childminder. My own children are one thing but someone else's?! Mind you, I don't get paid for mine so maybe that's where I've been going wrong!

I feel a bit more positive today. We're going out for lunch to celebrate my mum's birthday so no cooking for once which is great. We had a takeaway last night too so I'm really am having a weekend off. Thank you all again. I'm sure my husband would say thank you too as you've probably lifted the burden of having to listen to me moan so much this weekend!

Kathryn
xx