RA - feel I'm going round in circles - (whinge alert!)

[vole3]

I have recently been diagnosed with RA and I am still waiting for the drugs to work. Painkillers and anti-inflammatories are doing not a lot (or words to that effect).
Luckily my 9 week old son is only getting me up once or twice after midnight now, but I am still really tired, presumably due to the RA.
If I have a lie in, I then lose valuable 'mobile' time, and if I have an afternoon nap I seize up again. If I don't do either then I get tired quicker and seize up anyway. The only thing that is getting me through the day is when my son smiles at me.
I guess I'm still adjusting to my diagnosis and my limitations and getting angry about it.
Today all I've managed is to get myself and Michael up and dressed, fed myself and breastfed him as and when and done 2 loads of laundry.
This time last year I was going to the gym 3 times a week, working full time and then some for the NHS, running the house, keeping a vegetable garden, getting ready for a walking / fishing holiday in Cornwall and planning starting a family. What a difference a year makes! Even 7 weeks ago I actually had a clean house, was gardening, able to walk everywhere, having friends round for dinner and that was with a 'new' new baby to care for.
I'm sure I will feel much better once the pain and stiffness are controlled, but I seem to get to the early evening and have just had enough of the day. The thought of enduring this for another 10 weeks or so before I get results is tough to say the least, but I will get there.

Thank you for letting me get that off my chest. My husband is a nurse and supporting me as much as he can, when he's not at work. He says I have improved - I just wish I could see it happening a little bit quicker.

Give us a clue.

What's RA?

surprised it will take ten weeks to give a firm diagnosis or is it delayed because you have recently given birth, seems to be a common time to be diagnosed with that type of condition esp as all the pregnancy hormones have been keeping everything undercontrol

drug treatment is more limited if you are breastfeeding (either unsafe or untested) hope things settle soon

Rheumatoid arthritis.
Diagnosis is confirmed, it's just that as you have to gradually increase the dose of the drugs to avoid the side-effects, it takes a while for the body to respond.

hi vole3 - I was on another thread you were on a while back. My condition is very similar to yours and mine came on during pregnancy and flared after the birth. What drugs are you on? It's good you're able to breastfeed on them. It's very hard waiting whilst the drugs kick in, 3 months is a very long time when you are in pain. The only way I got/get through the tough times (DS is 14.5 months) is calling in all support I can. My friends have been fabulous, I have a charity send someone in to help twice a week, my mum has bailed me out despite living 100 miles away... it's tough but you have to learn to ask for help. Also think about what you do that aggravates the pain and think of what you can do to make it better - no one will do this for you so search on the internet for things to make things easier. e.g. I struggled for months with the car seat and then came across one which rotates so I don't have to twist to put DS in etc etc. Also it may be worth asking your GP for a referral to an Occupational Therapist who can look at things in your home and make suggestions on how to make things easier. It's hard because all the while you're not just dealing with the monumental impact of a new baby but you're coming to terms with a life-changing diagnosis and that's tough. But it DOES get easier as they get older. And as the drugs kick in you'll start to realise you can do some of the things you could do before.

And there was a good three weeks of people telling me I looked better and was moving more easily before I actually realised that I FELT better, so maybe things are on the up?!

Let me know if I can give you any further info etc. All the best.

Hi, Just an update on my DD who was told by the rheumatologist that she might be in the early stages of RA - she has been having two acupuncture treatments a week plus some Chinese herbs for RA and she is 99% better. Still has little stiffness in her fingers and shoulders/toes but nothing to cry about now. Either it is NOT RA (perhaps reactive arthritis etc. etc.) who knows. The steroid injection given at hospital did not work so then she tried the acupuncture treatment. She is now down to one Diclofenac per day rather than two and there has not been an increase in pain. Another place to look is the Margaret Hills Clinic website - there is also a book. Her RA was controlled by diet. Worth a try.

I did get her book out of the library and gave the diet a go for 2 weeks. During that time I seemed to get worse, not better, so gave up. DH didn't help much by eating what I couldn't in front of me with a big grin on his face I am under the care of the phsyios now and due to see a nutritionist next week.
I am pleased to say that I haven't got any worse in the last 2 weeks and I have been having more better days and longer periods of mobility, but I still have to pace myself or else I suffer the next day - today being one of them! I have ended up increasing the amount of codeine I'm taking, but as I'm still not painfree and only just about pain-controlled I'm gonna keep taking the tablets.
The only backwards step I've taken is I've become more anaemic over the last month and have started back on the iron/folate supplements and Spatone.
I have thought about giving acupuncture a try, but on the rheumatoid society website it said that nothing had been proved, so I'm a bit loathe to part with my money at the moment.

vole3 - Margaret Hills is an interesting one. I too gave her diet a try (of course you do, out of desperation). However I have since read another more scientific diet book (can't remember name/author at mo but will look it up) and the author points out you only hear when a diet works you don't hear the countless people who it didn't work for. This book is broader and examines many diets out there for arthritis (it's written by a rheumatologist who herself was skeptical). She suggests the only valid way of seeing if you RA is linked to diet is by going on an elimination diet and cutting out EVERYTHING that could be suspect and then gradually reintroducing. I've been meaning to get started on this for months but it takes AGES and I just haven't been able to devot the time over the summer. However what I did take from the book is there seem to be common problem foods like dairy or wheat and so it can be worth trying to live without them for a while to see if that helps. However, the nutritionist can discuss all that with you.

I probably will give the elimination diet a go once I stop bf - doesn't seem sensible to severely limit myself if a lo is dependent on me for their nutrition. I had hoped to carry on as long as possible, but the rheumatologist has suggested that it may be necessary to give up at 6 months just so they can have a greater option of drugs. I guess we'll just have to see what happens.

Hi Another thing to try - I spend ages looking for information on things to try for my daughter who has been confirmed as having RA after pregnancy.

www.earthclinic.com/CURES/arthritis.html#apple

The acupuncture/Chinese Herbs are helping a lot. She was given a corticosteroid injection but we believe it did not work - or do they take weeks to kick in? Does anybody know? What were your blood test results? I am not sure what is high or not. To those on medication, what are you on and how long before it starts to work. Does it stop the damage AND pain?

I am sure that there will be a vaccine soon. There are loads of clinical trials going on out there. Take care A

I have now been on the DMARDs for almost 7 weeks and it is only in the last week to 10 days that I have got anywhere near back to normal. I have also been taking diclofenac and have upped the codeine to help with the pain control. The DMARDs will hopefully reduce / prevent the joint damage, but they won't do anything for the pain whilst inflammation is still present. I am taking omega 3/6/9, glucosamine, chondroitin, ambrotose, beta TCP, pregnacare and Spatone supplements too.

I am able to do a lot more, but the tendency to overdo things has caught up with me once or twice, but I can see light at the end of the tunnel now.

I have also been to see a nutritionist and have cut out white flour / bread / pasta / rice and drastically reduced sugar intake so that may also have had an effect. I am allowed 2 squares per day of 70% cocoa chocolate thank goodness! She has suggested I take the Yorktest food intolerance test as preliminary tests show there may be a problem, but I am rather loathe to start an exclusion diet whilst BF and part with the best part of £200.

Looking back at the first post I made a month ago I can really see the difference, just a shame it's taken this long.