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Rank: Newbie
Groups: Registered
Joined: 2/24/2011
Posts: 4
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Hi my name is Rachel and I was diagnosed in 2010 its taken me a while to get used to this but am getting there.
I have looked at the forum board before but not done anything about writing so thought that I would join today.
I have to say the treatment I have received for my RA has been good and am managing ok, although still have good days and bad but I can deal with the pain its the fatigue that gets me bad and I dont think anyone really understands this as most of the comments I get from my partner if I go to bed early is you are always tired, how I can I get him to change his mind set and understand that this is all part of this without waving a leaflet under his noise and getting him to read it.
Anyway for someone who only wanted to introduce themselves and start using the forum I think that I may have gone on a bit.
Hello to you all and thank you for reading
Rachel
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi Rachel
Welcome to the forum.
I was diagnosed earlier this year, am on MTX and Hydroxy, plus of course folic acid.
Not sure how you get your partner to understand how RA can make us so tired, apart from giving him a leaflet to read, or this site of course. Because we don't look I'll it's difficult for people to understand how we feel.
My husband has Parkinson's (early onset as he is only 50) so he understands as he gets very tired too.
I'm sure there will be some good suggestions from people on here!
Let us know how you get on.
You didn't get too carried away with your post, it's good to get things off your chest and we all understand how you feel.
Mary
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Rachel A very warm welcome to the forum. I am sure you will find it a place to get information, advice and support. I understand what you mean about fatigue, it is so hard to explain how exhausted you feel at times, I hope that your husband will begin to understand but maybe you will have to show him some written information. I am pleased for you that you seem to be receiving good care from your medical team. I have been diagnosed for 6 years and am currently on Enbrel and Methotrexate along with Folic Acid which is working well for me. Look forward to hearing more from you. Best Wishes Sue 
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 Hello Rachel So sorry we meet like this, welcome to you. I like reading about what people type, you didn't go on - just do what you feel is write! I've had ra since 2007 when I was 34 years old. I'm in the process of having my meds tinkered to get a flare under control. My husband takes things in his stride with my ra, he does my pills (his way of helping)! I've got leaflets and books, he knows where I keep them if he wanted to read. I think he has a look on nras when I'm not around. I took him to hospital appointments from the start so he knows what is going on and I don't have to remember what was said! He tends to look after our daughter when I have appointments so I have some quiet time with the rheumy guys. Maybe he is adjusting in his time? I'm saying good bye for now, tired. Done lots of tweeting today to raise arthritis profile for national arthritis day on twitter! Take care Nice to meet you! Jane xxx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Rachel
Welcome to the forum, pleased you have joined us on here as it is a great place to support each other with all the ups and downs of RA. I think Nras have produced a booklet for family members, to help them understand RA better, so that may be an idea, it certainly must be very hard for you at times, fatigue is such a huge part of having RA. No doubt you will hear from other members with their thoughts too.
Take care, Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Hi Rachel. Welcome to the forum.
I'm Naomi and I was diagnosed in 2011 so am quite new to RA. I'm still struggling with lots of aspects of RA and one of them is getting people to understand the fatigue and other symptoms that I endure. I'm coming to the conclusion that it's only really important that those closest to you understand. In my case that includes my boss and my partner. I think the only people who can really empathise with us about fatigue are the people who actually suffer with it. Other people need to have at least a logical understanding that the fatigue of people with RA is limiting and requires rest so that we don't make ourselves ill. In my case I did get my partner to read certain articles and leaflets about RA and fatigue. I'm lucky that he wanted to understand so that he could support me. He has been great, always encouraging me to take the rest I need so that I can stay as well as possible. I'm just saying how I got round this....I hope you can find your way.
Well, I do hope we meet again on the forum.....Best wishes from Naomi, X
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hello Rachel - very nice to meet you, although I'm sorry it's a shared link with RA! I've only recently been diagnosed and joined the forum, but I've probably had RA for nearly 4 years. I got really bad and could barely walk before I finally was seen by the rheumatologist, and then everything changed as my meds began to kick in. One of the really difficult things is coming to terms with being on drugs for the rest of my life (I'm only 54) - I've always hated the idea of being dependant on anybody or anything, but now I've had to accept that I need meds to feel "normal". I've also had to accept that fatigue is ever-present, but manageable, and it doesn't have to rule my life. My husband took a long while to really understand but now he's finally got it - one of the things that he found really difficult was that he didn't know "what to do" - he felt powerless to help me and so he got frustrated and sulky and that made me miserable too. As time goes by, I'm learning what helps me, I've been able to ask him to do certain things and that means he feels more useful and he can understand what I need and our relationship is better than it's ever been!!! Bless him!! For me, I need to have a sleep in bed in the afternoon if I've had to do anything stressful or busy - so I ask him to wake me up in 2 hours with a cuppa and to deal with the kids & phone while I'm asleep - I get what I need and he has something tangible to help with, and quite frankly he likes having a couple of hours to watch the footie or surf or whatever, so it's a win-win. Then I wake up feeling reasonably refreshed and can enjoy the evening together and go to bed at a normal time. Hopefully, you'll find the things that help you to relax and so you'll manage your fatigue better, but do keep chatting to your partner and gradually he'll understand I'm sure. Best wishes and keep posting to let us know how you're getting on - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member
Groups: Registered
Joined: 4/20/2010
Posts: 153
Location: Kent
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Hello Rachel A very warm welcome to the forum, you will receive lots of support and information on here which really helps when you are having a bad day. I'm 38 and was diagnosed with RA 3 half years ago, I do find the fatigue one of the hardest things to deal with. I can fall alsleep with no problem at any time. My Hubby is very supportive but i think this is the one area he doesn't realise. For example yesterday we had a real lazy day and I started falling a sleep in the afternoon, very annoying when you are trying to watch something! Then i fell asleep round my Mother & Father in law's house in the evening, very rude of me but think they are used to it now.  But i think once you feel the fatigue there is nothing you can do to fight it and its worse if you are in pain. I hope you find the forum really useful and supportive. Take Care Lou xx I love people who can make you smile even when you do not feel like smiling. x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello and a lovely big welcome from the message board users I see! I'm jenni I'm coming horribly close to 37.... Married with 3 kids Oldest at college Youngest just started school And me erm, well severe ra but totally bonkers....;-) Welcome again Jenni x how to be a velvet bulldoser
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Rank: Newbie
Groups: Registered
Joined: 2/24/2011
Posts: 4
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Thank you to all the hellos I have received at the advice its been great and will continue to use the RA forum.
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Rank: Advanced Member  Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi Rachel, As someone who has had her diagnoses only three months, I'm definitely new and ignorant so will leave all the wise and helpful advice to those who've already given me such good advice and support. There is one thing though I can suggest. You talked about fatigue, I too have it in shed loads and mentioned this while at the hospital yesterday - seem's it's part and parcel of the course, and almost as bad as the RA itself! The nurse there gave me a very interesting article written by ARC called Fatigue and it relationship to Arthritis. It's really, really interesting and well worth trying to get hold of. Good luck to you I hope you experience more good days than bad one's, those we can definitely do without. Gogs
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Rank: Member
Groups: Registered
Joined: 9/20/2012
Posts: 23
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Hello Rachel, I am pretty new to the forum too, I was diagnosed 2011 and am still struggling to find right meds. The tiredness really gets me down and has been very difficult to get my head round and my partners too as I was such a bundle of energy before. I think over time they understand it more, keep talking and leaving leaflets around. It must be very hard for them to see us struggling with this too. Really hope they get your RA under control, keep smiling and off loading here, since I joined, although not on it lots, its so reassuring to occasionally sit and read through everyones entries, you are not alone Take care Juliex
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