Fellow mums with Rheumatoid Arthritis, how do you manage?

[Jemster]

Hello, I am new here but am hoping to hear from any mums in a similar position to me.

I have a three and half year old son and shortly after he was born I developed rheumatoid arthritis. At first it was unbearable, the pain and the fact that I was a new mum and I just didn't cope very well. I went to the antenatal groups hoping to make some mum friends but I could hardly hold my baby and they all seemed to be coping so well I just felt I didn't fit in and never went back.

Since I've been on medication it is less painful and mainly affects my wrists and hands. It took me three years to come to terms with the condition and I felt very low for a lot of that time. Going to back to a job that I enjoy really helped me and I am lucky to have a kind and supportive husband. I have spent the last few months trying to find ways to help myself so that I don't let this get me down but I am struggling at times, especially when it flares up and things get hard again.

One thing that I find difficult is that I feel isolated as I don't know any other mums with this. On a down day I can end up feeling resentful towards my husband as he has to do things for me. I just want to be a proper wife and mother and when I can't be it really frustrates me and makes me really upset. I don't want to spoil his life but feel at times I am dragging him down with me.

I would love to hear from any other mums who have RA and how they cope with being a wife and mum. My consultant and GP have both told me that with the good new medications available now, the condition is manageable and for that I am thankful, but they do not seem to have much practical advice for bringing up toddlers and how I can make things a bit easier around the home.

Sorry this is rather long but I felt it was time I asked for some help and advice rather than just wallow!!

Thank you

[CMOTdibbler]

Is there an RA support group near you ? I know there is one at out local hospital as my physios friend runs it (we were talking about it as she helped me find out what life was like with a wrist fusion via this friend).

I'm good with hand related gadgets if that helps

[Jemster]

Hi there
I am not sure if there is a support group at the hospital, the nurse has never mentioned it but I will investigate. Could I ask what sort of gadgets have you found helpful?
Thanks

[CMOTdibbler]

I've got things like Dycem mats (non slip), one touch can opener, jar opener and grater, electric pepper mill, drainer scoop (so you don't need to carry a full saucepan to drain stuff), chopping board with sucker feet and spikes to hold stuff, Babyliss big hair (really light and easy to do your hair with), steering wheel grip/spinner, elastic lock laces, - well, loads of stuff really. I also eschew pretty handbags and have a canvas cross body one with lots of pockets so I can find stuff easily and theres less pressure.

I have one functioning (although protesting) hand, and one with virtually no function, fused wrist and no elbow rotation, so those are my limits.

Do you see a physio ? Mine has been fab, and I have a specialist hand therapist for splinting. The OT was helpful, but seemed limited in what she could do, but the OTs at my local disability shop have been brill in helping me find gadgets

[Jemster]

Thank you for the ideas. I like the sound of the babyliss for hair as I do find it tiring holding my hairdryer as it is quite heavy. I will look at getting some of these products, I didn't realise there were so many things out there. Sorry to hear about your situation but you sound as though you have thought of some good ideas to make things a little easier.

[morechocolate]

I have RA too and 3 young children. When I was first diagnosed I was told that we did not have any local support groups, the only ones for arthritis were not specific for RA and everyone was old and I have never reinvestigated.

The most helpful thing for me was to get out everyday to baby groups even when I struggled to walk. I asked for help whenever I needed it even though I had never ever asked anyone for help before the diagnosis and I found it very hard. I remember times when I was asked to pour the milk or sign my name at playgroups and having to explain that I couldnt but I would explain why.

Although I never met anyone else with RA by getting out and about and being open people then shared their problems some of which were far worse such as breast cancer or problems with their children and I felt relatively fortunate. Always felt it was better to be me than one of my children.

[notfarmingatthemo]

I have RA to, my girls are 5 and 9. I have good days and bad days. Now the youngest is at school life is a bit different. Once I have them at school I can go home and rest all day if needed. I find if I do something big one day (like day out to a zoo) can't do to much for at least the next day. I plan the holidays very carefully so they get to do as many fun things as possible, we also space trips to friends out as the are easy days.

We go on camping holidays, I just except by the end of the holiday I will be really stiff (I take a camp bed, porta potty and a hot-water bottle) all of which help. Camping means the girls are able to have lots of time riding bikes which the don't get much time for normally.

Over the years I have worried about them maybe not being able to walk very far as I can't. But because I walked all the journeys I could and got them out of buggies when possible they can walk further than most of their friends.

[Jemster]

Thank you for your replies. I feel really relieved to have heard from some ladies in similar situations.

morechocolate - I still find it really hard to ask for help. I was brought up in a family where people don't talk about things like this and my family (not my husband) are still very much like this. As a result I find it very difficult to tell people about my condition, I just try to carry on as if I haven't got it. I find this adds to the stress at times as I just can't do things as easily as I used to be able to and then I get upset. I think I will try what you did and start being a bit more open, I'm sure most people would be happy to help if I only asked.
Would you mind me asking, did you have RA before you had your children? How do you manage the daily things with the 3 small children, i.e housework, cooking tea, ironing etc? I have started to my food shopping on line which is brilliant but am interested to hear of any other tips that mean I am still able to contribute in the home.

notfarming - it sounds like you still have lots of fun with your girls, I can see that it is possible but that things might just take a little more thought and planning.
If you have any other tips for managing things around the home, I would love to hear them.

Thanks again

[morechocolate]

I got my RA during pregnancy with my first child aged 39, having never had any ill health or any warning signs. Honestly I had never ever asked for help and was so independent renovating my house etc. I had lived on my own for 5 years before getting pregnant and had a great career so it was really hard to ask for help. I actually think it was really good for me to have to ask for help as I would imagine people could think I had a perfect life and that I might appear too assertive. I have found if you open up then people reciprocate and I find myself surrounded by friends who have all suffered in some way. If I met people who didnt react as I would want to the RA then I didnt make friends and I am quite happy to not be friends with lots of people. I like being around people who have lived in some way as I found some of those with perfect lives very shallow and appeared to be thinking that they had caused their good fortune ie no divorce or special needs in their children rather than just luck and I couldnt relate to them.

I dont do housework I have a cleaner and if she doesnt come it doesnt get done, I am very lucky that I do not think cleanliness is too important.
My father or husband would chop everything in advance for example for me to make baby food or casserole. I dont really go shopping (luckily I am not keen) so dont miss that and wouldnt take my kids shopping ever anyway. My husband does internet shop for food and anything else is usually ebay or internet too. I do the ironing with a top of range steam generator which is permanently set up in utility room so I can just iron a few things at once if necessary and dont have to set up iron and board each time.

My RA is not too bad at all at the moment but I have been either pregnant or breastfeeding virtually continuously for 6 years and I think that helps me, although my consultant strongly advised me against a 2nd and especially a 3rd child and did not agree it would help. I have finally stopped feeding my 3rd at 18 months and there will be no more or my husband will leave me. Have to see what will happen to the RA now. What medication are you on?

[RunnerHasbeen]

I have RA and baby on the way so can't really help with toddler advice but did want to ask if you are sure there is nothing more your consultant can do. With the right drug combination I live a completely normal life, despite the initial flare ups affecting most of my joints to the extent that I could not get out of bed or feed myself. I also get help as soon as it starts to niggle as it only ever increases if left to its own devices, the doctor prefers this to the years when I didn't want to make a fuss and let it get out of hand.

It really helps to admit to other people when you are struggling, nobody thinks less of you, honestly. I think RA has helped my outlook on life, I have really seen the best side of so many people, family, friends and strangers. You'll find when you open up to people that they do in return and that nobody is perfect and they all have things they are struggling with. Resenting your husband for helping you is a different issue than having inflamed joints, it may have surfaced had you been in an accident/ lost your vision/ depression/ any number of things that require some help and perhaps it is that you should try and work through.

I'm afraid that if there was a special mums with RA group that I would not join it, I don't feel sufficiently different from everyone else any more. It is particularly difficult when you are still coming to terms with having a condition and the sense of isolation is normal, but I think that feeling has more in common with any chronic condition after diagnosis rather than being specific to RA. It took me years to have the confidence to join sports clubs where I might need some adaptations or to be more careful and therefore stand out. Now I have no shame about saying when I can't do something and as I don't think anything bad about the diabetic member who has to stop to check her blood sugar, I assume no-one thinks badly of me if I refuse to help with heavy lifting.

[Jemster]

Hi, thanks for your replies, you won't believe how much this is helping me.

Morechocolate - I was taking methotrexate and humira injections for a couple of years but I stopped them both at christmas as we would like to have another child. As they should now be out of my system we are actively trying for a baby! Sorry, I didn't mention that at the start becasue I am just concentrating on now and how I can improve things for me and my little boy. It is very interesting to hear that your consultant advised against having more children and good for you for doing what you wanted to do and twice! My consultant and nurse have both been very supportive of me having another one, they said if I've always wanted two children then I shouldn't let this stop me. I have been taking steroids as advised by my consultant for the past few months to get the other drugs out of my system. Were you able to take any medication whilst ttc or whilst pregnant? From what you say it sounds like it wasn't too bad during pregnancy or after the births? My first and worst ever flare happened after I stopped breast feeding and I have heard that that helps to keep it bay. Of course the first time round I didn't know what the problem was for a while, so I hope next time I will be more prepared with help from my consultant etc. I am managing ok on the steroids but don't feel as good as I did on my ususal medication, but I figure it will be worth it to complete my family.

Runnerhasbeen - congratulations on your pregnancy. Your post has made me feel so much more positive and hopeful, thank you. Do you mind me asking how long you have had the condition? I have done exactly what you said in the past and not wanted to make a fuss, so I have just put up with things when they have got bad again instead of contacting the consultant. Have you tried different drug combinations and do you find that they can work for a while and then stop being as effective and you try something else? This is what I found - I had a year of feeling like normal and then it seemed to creep back again. I was going to try something different but it was then we decided to try for another baby so just went on to the steroids.
I see your point about how it helps to open up to other people, I am really going to start trying that more. For three years I have bottled this up, I grit my teeth when things are bad and I always say "I'm fine" when people ask how I am, even though I may not be at all. The hardest is with my family. They all live close by so could be a big help but they rarely ask how I am and if i bring the subject up they seem to get all awkard and uncomfortable about it. I just find it so hard to pick up the phone and ask them to help me because I am afraid of their strange reaction to it all. My boss on the other hand has been wonderful and supportive so I am very lucky there. My husband too is wonderful and I need to give him a break and stop resenting him and just be happy to have him!
Out of interest what sort of sports do you participate in? I am still trying to find myself some form of exercise routine.

[RunnerHasbeen]

Ah, you are at the "no drugs as wanting a baby stage" then I completely understand you feeling as crap as this - it was my least favourite time and I don't think the steroids help your mood. It isn't so easy to make a fuss just now as you are effectively enduring something for a long term baby plan, so ignore that! One thing they did do was rush me through the fertility tests, if it wasn't going to happen there was no point in me risking my joints, it also helped me feel I was doing something.

I have had arthritis between 9-11 years, depending whether you go with symptoms or diagnosis. I wasn't wrongly diagnosed, but they originally thought it was a symptom of ulcerative colitits, only when they sorted that and my joints were still bad did they say it had been RA as well. I think I had it easy with my family as I was fairly young and so extremely ill that hiding it or playing it down wasn't an option. I found it harder to mention to people later when I looked completely normal and healthy (felt like it was a disguise).

As for exercise, I started off with swimming and pilates, which I really think helped as muscle tone can take some strain off your joints. I then started low impact at the gym, originally under GP referral. Before falling pregnant I was running, mountain biking, kayaking and playing squash (now back to swimming and gym). If my hand was sore I could still run or swim, if my foot I could kayak - it helped to have a range of interests so there was always something I could do, instead of focusing on what I couldn't. I also save up books I want to read for times I'll be unwell, so it feels more like an indulgence than an affliction.

[morechocolate]

I have never taken anything other than prednisolone because I have always been pregnant or breastfeeding since I got RA. My consultant was always saying I had to get onto methatroxate urgently because of the damage from long term use of steroids. Now I am finally in a position to move to methatroxate he is less concerned and I havent moved and am very unsure what to do as I have lost trust in the whole medical profession.

I have been lucky that any side effects of steroids that are immediately apparent seem to suit me (not sure about the long term damage though). Think they increase my appetite and weight which is fine as I was underweight and I need to eat to breastfeed etc and my blood pressure was very low so whilst higher it is still below average. I have taken the steroids continually for over 6 years throughout the last 2 pregnancies and whilst breastfeeding all 3 children. I think breastfeeding helped me but I also love it so was not just doing it for the RA.

I used to take diclofenac and codydramol as well as the steroids as advised by my rheumatologist and then couldnt get pregnant. No doctors/consultants/fertility clinics including private Harley Street advised that a side effect of diclofenac is temporary infertility despite my querying if any of my drugs could be the cause!!!! I got pregnant the week after I stopped taking diclofenac so it does not have lasting effect but do stop if you are taking it. Check carefully if you are taking anything else as they do not have to put this side effect on the instructions although it is listed on the doctors website. I did write several letters trying to get it added as it is such an important side effect.

The other problem I had was the hospital insisted on testing my babies blood sugar levels continually because of my taking steroids despite it having been agreed in advance that that was only required if you were on very high doses which was distressing as every time they settled after a feed they were upset by a pin prick. I had 3 csections and was out of hospital within 24 hours each time and would have been out sooner if I could.
Good luck with getting pregnant.

[trope]

hi, not a parent (yet) myself so can't comment on the coping with kids side of things, but just wanted to comment about the drugs in pregnancy thing. I have enteropathic arthritis so treatment is very similar to that of RA.

I spent years and years and years trying to get off meds/stay healthy without them to start a family as my consultant said there were no meds I could safely get pregnant on (I don't respond to steroids and have osteopenia so they weren't an option for me). He refused to let me use anything other than methotrexate as a base medication so my only option to have a kid was to come completely off meds, wait 6 months then try. So I spent years getting off meds, relapsing, going back on meds, getting better, getting off meds again etc etc

Anyway, I eventually realised my consultant was an arse, did some research and got a second opinion from someone who was more up to date with current research and thinking. To cut a long story short I am now on humira and azathioprine, am in full clinical remission (this is the most effective combination of drugs I've ever had) and trying to conceive!

Azathioprine isn't recommended for use in pregnancy by many rheumatologists, however it is widely used by people with IBD during pregnancy and there is no evidence to show it causing any kind of birth defects. The only thing it does is very slightly increase your risk of miscarriage. However, if you have a flare while pregnant, that is far more likely to cause a miscarriage than the azathioprine, so personally I consider it a risk more than outweighed by the benefits.

The makers of humira have a large database of people who have had pregnancies whilst on humira and there is no evidence of birth defects from that either. Numerous studies have also shown there to be no risk of birth defects etc from the humira. (There was one primate study very early on after humira was licensed which used massive doses of humira that showed a weak correlation to a particular type of birth defect, that study has been fairly comprehensively debunked now though (small sample, poor study design, badly analysed stats etc) and it's results deemed not statistically significant i.e. the results were just as likely due to chance, not the meds - and the results have never been duplicated elsewhere, so it seems safe to assume that it was a one off bad result due to chance, not an indication of a problem). It hasn't been around as long as the azathioprine, but it is increasingly being used during pregnancy for people with serious arthritis/IBD and is now also being used as part of IVF treatment for some people who have problems with high levels of NK cells.

Generally doctors will look to reduce/stop these meds in the 2nd or 3rd trimester (depending on your medical situation, level of immune activity etc) as there is some evidence they can pass through into the baby in the later stages, however no harm has been shown to come from this, so where people have active arthritis/IBD they can continue on with the meds if needs be.

WRT breastfeeding there is again no evidence of risk/side effects, but as there haven't been as many studies in this area many doctors suggest you don't breastfeed just in case.

No worries if you're drug free by choice - just thought i'd mention my experience in case it was useful for you! My arthritis is quite bad and as I have IBD as well my consultants were clear that staying on meds was way better for both me and any potential baby! Obviously that might not be the case for you, but if you are suffering and your consultant isn't knowledgeable about meds in pregnancy you do have a right to a second opinion from someone else.

One last thing - post birth flares are very common! Often they will be the most serious flare you have apparently. I saw a consultant obstetrician for a pre-conception appointment (as i'm classed high risk due to my health problems) and she said around 6 weeks post birth is where most people find they have trouble. Also, auto-immune conditions increase your risk of pre-eclampsia, so your doctors should also be watching out for that!

Best of luck getting pregnant! I hope you have an easy time of it! :)

[trope]

morechocolate just to add - have you had a dexa scan to check your bone density? Long term steroid use can thin your bones - it's potentially one of the reasons why I have osteopenia (diagnosed with it in my late twenties!) as I was given steroids on and off from my teens onwards (despite them not working - grr!)

Methotrexate can thin your bones too though (it's a folate depletor) so watch out if you switch to that! You should be on calcium supplements and high dose folic acid alongside it.

I know what you mean about losing faith in the medical profession! Have had so many crap doctors/consultants over the years - it wears you down having to always be on the look out for bad advice, always having to educate yourself and advocate for yourself! The relief when I found a really good rheumy was great, till she abruptly left last month :( I've tried a few drugs over the years (sulfasalazine, steroids, methotrexate, humira and azathioprine) - feel free to ask if you have any questions about them. Be happy to share what knowledge I have if it helps!

[rosar]

DF uses black seed oil (Nigella sativa). Takes 1-3 tablespoons a day, and also applies it on joints, with about 3% of Rosemary and Myrrh essential oils.

[morechocolate]

Thanks for this. Yes i had a bone density scan the week before i last got pregnant so over 2 years now and yes i had osteopenia as i understand it but not quite osteoporosis. My rheumatologist gave hugely conflicting advice but always said calcium was not necessary but I am now taking 600mg but nothing else. Now typing this I seem to remeber him saying i should take another stronger supplement when i stopped being pregnant and breasfeeding that you just take weekly but I had forgotten totally to query this. I dont take folic should I even thought I dont plan another baby??
Any thoughs when should I be rescanned?

How did you find a good rehumatologist? Any tips welcome as I dont plan to go back to mine - he has discharged me to my GP but my GP has said I need to see a rheumatologist to get any other drugs than the steroids. I am living in denial really about long term effects on my body as have so much to cope with my eldest sons problems it is all consuming but I really should do something. Do you know where your good rheumatologist has gone? anywhere in the Home counties??

[trope]

morechocolate I am on a schedule (in theory at least) of dexa scans every 2 years to monitor it and make sure I don't slip into osteoporosis. I am on Adcal D3 tablets - 2 daily. These contain 1500mg calcium carbonate (which is the equivalent of 600mg calcium apparently) and 400 I.U. colecalciferol (equivalent to 10micrograms of vitamin d3). You need the vitamin D to process/use the calcium.

When I was on methotrexate I was on 5mg folic acid 3 times a week. I didn't tolerate it well though and was told I didn't need to take it if I didn't want to - which was completely wrong. When I changed consultant to my good one, she advised I try taking the pregnancy dose (400 micrograms) daily instead - which I have tolerated and am still on. It is absolutely vital if you are on methotrexate as it depletes your stores of folates which you need to maintain bone density - so if you already have thin bones it's really incredibly important. Personally I'd ask about other meds you could try; sulfasalazine or azathioprine which should be less risky for your bones.

In my opinion and experience, if you have osteopenia you should definitely be on calcium supplements and depending on your age they may want to add in some other meds (sorry - have no idea how old you are!!) Both my mum and I have it and we were both told how important it was to take the high dose calcium supplements. The research on how effective it is is a bit shaky - studies have found mixed results over the years, but my understanding is that current best practise is to prescribe the calcium supplements.

Finding a good rheumatologist is like finding a needle in a haystack. I found my good one through a couple of methods; I googled and searched online forums about arthritis for recommendations in my area. I spoke off the record with the specialist nurse at the hospital and explained what I was looking for and asked for her recommendation. This was given, but I was never to tell anyone that she did this as she's not supposed to do that! (She's retired now, so I'm sure she won't mind me mentioning her anonymously here!) She recommended one of the people i'd seen good comments about online. I then googled that person and read as much about her as I could, to try and see for myself what she was like. She turned out to be 100% awesome!

She has now left (I got 5 days notice!!!) to work on her speciality - rheumatology services for people with HIV/AIDs - she's based at the medical school nearby - but doesn't see general rheumatology patients anymore. I found her PAs email address online and have used that to try and reach her to get a recommendation for someone else I could see nearby, as I'm a bit unusual (on meds, TTC, have less common type of arthritis and don't respond to usual pregnancy meds). I'm waiting to hear back at the moment.

Most rheumatology departments have a specialist nurse based with them - even if you aren't currently in their care you should be able to speak to them, probably just over the phone, to discuss your options. They are usually pretty helpful - explain how you are / your situation and the problems you've had in the past and ask who they'd recommend you see.

When I first got sick I saw a really good consultant at Frimley Park Hospital - don't know if you're anywhere near there? They have a really good & well organised service for rheumatology patients and I found Dr Mark Lloyd to be a wonderfully supportive and positive rheumatologist. (I presume it's OK to name names here as it's a positive comment! Sorry mumsnet HQ if not! Feel free to delete and I'll PM instead if needs be!)

I'm stunned that your rheumatologist discharged you - they should have been paying you more attention, not less if you were having kids/just on steroids! One of my crap rheumatologists (the first one I saw after I moved) was like that - discharged me as i came off meds to TTC - so when I inevitably relapsed barely 6 months later I was at the back of the queue to see someone!

Is so hard trying to find the energy to fight the NHS/get good care when you've got a disease that leaves you exhausted all the time :( Really hope you can see someone better this time!

[Jemster]

Trope
I am with Dr Lloyd at Fph. Would you mind if i pm'd you as have some questions about their services that i'd like to ask you?
Many thanks

[trope]

Hi Jemster - sure, feel free to PM me! Should warn you that I left Dr LLoyd's care about 5.5 years ago now, so my knowledge may be out of date! Happy to answer any questions I can though :)

[Sparkie2001]

Hello

I am new here also but thought I'd post to say that I've had RA for about eight years now and have recently had my first child. I was absolutely fine throughout the pregnancy and was drug free until approx six weeks after birth when it kicked back in with a vengeance. I am now on prednisolone to enable me to breastfeed but am rather concerned about the long term side effects so am a little reluctant to continue for much longer.

In terms of coping I've not really developed any major strategies however I'd also be keen to also hear if anyone has any advice re: managing with babies in general. My wrists/elbows/shoulders are the most problematic joints and I'm really not sure how I'm going to be able to pick him up when he gets much bigger!

Medication wise I have a fab rheumatologist who is looking to get me back on methotrexate and an anti-tnf soon. Prior to getting pregnant I was on methotrexate for around a year which worked brilliantly however I hated taking it due to the nausea although it did lessen over time. I have very mixed feelings about medication in general and spent years avoiding doctors after a bad experience with a rheumatology nurse following diagnosis. It's certainly a hefty one to get your head around and I'm afraid I've avoided all 'support groups' like the plague as they seem to be aimed at the more older more chronic end of the spectrum...

[trope]

Hi shitmagnet - yep, still on folic acid. Originally because we wanted to make sure that my folate levels were at the right level as the methotrexate (mtx) left my system and we wanted to give my bones the best chance of recovering. But also as I was planning on TTC if the new meds worked/once the mtx was all clear and I am now, in fact, TTC! (Not terribly successfully so far, but we've only been trying for a few months).

Are you on mtx pills or injection? I tried both, but found the injection left me with far fewer side effects and it really wasn't painful to do either. I did it into alternating legs each week and never even got a bruise from it!

Having some food in your stomach (but not just eaten) when I took the pills helped with the nausea for me. I didn't get on with taking it at night as I found the nausea worse when lying down and for me the worst time for side effects was the 24 hours or so following the dose. Gentle exercise (walking mainly) seemed to help balance the side effects out too as did eating little and often instead of 3 big meals. I never found the folic acid helped with any side effects - for me the sole reason to take it was to try and protect/rebuild my bones.

The mtx can easily take 12 weeks to have a full effect, longer if you ramp the dosage up slowly, but once you are settled on it the worst of the side effects often abate. With any luck that will be the case for you!

The biggest issue I had with it was the fatigue; mtx just left me exhausted beyond all reason. That side effect never abated for me. I could barely function when I was on high dose mtx (went up to 27.5mg weekly at my worst) and even then it never fully controlled my arthritis. The fatigue was one of the reasons I was so keen to get off the mtx - I was really struggling to lead a normal life on it. The brain fuzz / feeling like you've lost 50 IQ points was awful too - I only read after coming off it that people often find that to be a problem. Since switching to azathioprine I've been like a different person. I feel like me again!

Regarding the biologics, I thought all the ones available were anti-tnf? Although I don't know much about the newest ones, so maybe one of those works differently. Sorry I can't be more help on that!

For me finding the right meds was the first step to getting things under control, but things like keeping active, eating well etc were really important too. In my experience the fitter I can stay, the less severe my arthritis is and the slower any relapses happen - which gives me more time to fiddle with dosages etc to try and stop the relapse progressing. Routine - which is super hard when you're younger/at uni/have kids I know - is also important for me. I've gone from being someone that could stay up all night, skip breakfast and still be fine, to someone that needs 8+ hours of sleep at a regular time every night, mealtimes to be as regular as possible or I get flaked out quickly and a pattern to the exercise I get, otherwise I, yep you guessed it, flake out! (Going to be interesting to see what me having a baby does! No sleep, no routine! I must be mad!!)

I try really hard to keep up with the gentle exercise even when i'm in pain/feeling crap - obviously there's a balance there (the time I tried to walk to the seafront because I was bored of being at home, when I was having a flare so bad I couldn't put socks on as my feet were too swollen and painful - that was probably ill advised!) Try to not do too much on the good days and you'll find you have more of them, overdoing it generally only leads to a guaranteed bad day to follow!

Currently I play squash 1-2 times a week (only possible when i'm in remission), do an hour long pilates class once a week, walk for 20-30 mins every day and do some gentle stretches to open up my back/ribs on and off throughout the day. When I was sicker I focused on the gentle walk every day rather than trying to find the energy/strength to do anything more. I've found the pilates to be brilliant for stretching out sore muscles and also as a way of properly listening to my body; I often notice sore joints when I do pilates that I wouldn't normally notice! Gives me a kind of early warning of when things are starting to ramp up again.

I wish I could suggest something amazing that would be guaranteed to help you - it must be incredibly frustrating to not be able to attend uni. :( It's not the easiest advice, and you've probably heard it a thousand times before, but try and be patient and give the drugs a chance to work. Living with this disease requires oodles of patience. Don't be hard on yourself when you can't do what you want/need to do, rest lots, eat a good balanced diet, (i'm not a believer in faddy arthritis diets that cut out food groups, or require you to eat specific foods) and let the people in your life help you when you need it. That's really important - don't try and be superwoman!! My DP is amazing and I would be lost without his support, but my Dad is also great - I often call on him to do stuff in the garden that I can't manage and my closest friends listen to me rant and offer to help at home when I can't cope! I also find blogging a fantastic release and a way of sharing with my friends when it's too hard/personal to talk face to face about it.

Hope some of that helps! Feel free to ask if you have any other questions though - it's nice to be able to help people out who are in the same shitty arthritis filled boat as me!

(Wow - that was an essay & a half! Sorry Jemster for the thread highjack!)

[Jemster]

Hello Sparkie2001
Sorry to hear you have had the post birth flare up experience. When this happened to me also at 6 weeks post birth I didn't have a clue what it was, just knew that it's worst I couldn't walk, feed myself or pick up my baby. Once I was diagnosed and got the medication it was a relief but still incredibly hard looking after a baby whilst trying to cope with the pain. I too had a bad experience with the rheumatology nurse who I phoned for help in desperation. I said I cannot pick my baby up and she said 'sorry there's not much i can do about that', hmmm helpful!! Now ttc no.2 so hopefully we will get some helpful tips here for managing with babies. I feel I will at least be more prepared this time round and can prepare in advance.

Good news that you had no problems during your pregnancy Were you able to have a natural birth? Would you mind me asking what you took to get through the ttc period where you off the methotrexate? My rheumatologist has told me that the symptoms often go away during pregnancy so that would be nice as I would hope to be able to get off the steroids during the pregnancy. I hate taking them as I worry about the long term effects but feel that it is a short term thing i have to do in order to have another child.

Good luck and enjoy your new baby.

[Sparkie2001]

Hi Jemster

Yes the post birth flare up was a nightmare but to be honest I felt as if I was living on borrowed time as I'd been fine throughout the pregnancy. It was awful being unable to pick him up to feed him but the folks at the hospital were very good at getting me sorted out quickly. That was a terrible response you received though! Did you complain? I've met a fair few nurses over the years who have been lovely and a fair few who've been absolutely useless - it's really just luck to get the right person on the end of the phone. I really wish I'd raised my concerns about the first nurse I met who unhelpfully advised me to take a photo of my hands because they would soon become unrecognisable and progressively more deformed. Just what you need when you've received a rather scary diagnosis at the age of 26! Grrrrr.

Ah the birth didn't exactly go to plan, ho ho. At the outset I was shipped over to consultant led care by the midwife who didn't seem to know much about RA and panicked a bit. I then fought tooth and nail to get transferred back to midwife led care as I planned to use the local birth centre for a lovely water birth. In the end this was all rather pointless as my waters broke a day after my due date but after four days of contractions it all stopped. In the end I was induced, contracted an infection, my son became distressed and we ended up with a forceps delivery. My RA had no impact on the birth at all but they were very hot on checking for neck/hip problems which could cause concerns.

In terms of medication I came off the methotrexate in Jan 2009 and had a wash out period of six months - they recommend three but I was a bit cautious. They then put me on sulphasalazine which didn't agree with me at all so I stopped that and tried hydroxychloroquine instead which wasn't great but it held the pain at bay. Foolishly I was also taking diclofenac for pain relief until Sept 2009 when my rheumatologist stopped it and I eventually conceived in May 2010! It seemed to take forever. I immediately stopped the hydroxychloroquine when I found out I was pregnant and I felt pretty much fine apart from a little flare at around 10 weeks. After that it was plain sailing and I felt brilliant throughout the pregnancy. Needless to say I'd quite like to remain pregnant for another few years although maybe not go through the old labour malarkey and sleep deprivation again...

Yup, I hate the steroids but they work so very well. How long have you been on them? Did you have a normal delivery with your first child and did you have any problems with your joints before your son was born?