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Rank: Newbie
Groups: Registered
Joined: 5/25/2010
Posts: 2
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Hi.
Completely new to this so please bear with me. Was diagnosed with RA four months ago. Having been a very active person, running, hillwalking and golfing, I felt, and still feel to some extent, shocked and saddened to the core. Please someone reassure me that these feelings will pass in time. I used to be an optomistic and fairly confident person now I feel the stuffing has been knocked out of me with the onset of this disease.
Commenced Sulphasalazine immediately following diagnosis and feeling much better now in terms of pain management. Looking to return to work (as a part time Social Work Manager) within the next few weeks but not at all sure what physical supports can be put in place to make my return more manageable and sustainable. To this end I have contacted the OT who works in the Rheumatology department and I am hoping she will give me a steer in the right direction. My biggest fear however is being able to deal with the fatigue particularly given the nature of my job ie very stressful and demanding. Still really struggling with energy in the mornings and toward the end of the day. Can I expect this fatigue to lessen over time as the Sulphasalazine continues to kick in or is this something I'm going to have to live with.
Alison
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Alison
Welcome to the forum but sorry you have been diagnosed with RA. You have come to the right place for advice and comfort.
I was diagnosed with RA 18 months ago and it has been a long path in trying to find the right medication. I will not lie to you, fatigue is one of the hardest things I struggle with. I have a full time job and I am at the moment finding it difficult as my medication is still not right. I think each person is different and if you find the right medication, you may find that the fatigue lessens. The best advice I can give you is do not fight it. Rest as much as you can in between your busy periods. It will be hard accepting your diagnosis of RA, especially as you have led such an active life.
Keep posting and asking questions as there are some lovely people on this forum who have been there, done that and got the t-shirt many times over.
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Firstly, I am no expert on this as I find I do such a lot and then wonder why and collapse in a heap.
I would suggest you get an appt to see an Occupational Therapist and get them to talk to you about energy conservation.
I have found a good system that helps me balance life more. The idea is that you dont push yourself to the limit every day- you hold some back and so not totally wiped out a lot of the time.
It is called the traffic lights system.
I wrote it first for "lady golfer" Val when she hurt her foot and was shattered.
"One thing that has helped me- I bought a weekly planner diary from smiths and I plan in the traffic lights system.
a red activity for me is- putting out the washing, taking the children out somewhere, chasing Bernice, making some stressful phone calls to the gas company.cooking tea.
an amber light activity is- working on the computer, planning the calendar, making a shopping list (checking cupboards)eating lunch, going through the childrens school bags.
a green light activity is- chatting to a friend, reading me book, listening to music, enjoying a DVD, emailing a friend.
For a week i wrote a little note of what i did when, then I colour coded it. This way I became more aware of spacing out my reds with 2 greens, an amber with one green and trying to have no more than 2 reds in a day.
this made booking appts easier in the end because i could see at a glance I already have 2 reds on weds so thurs would be better....
Worth a try? Also, it is good to look back and really track why I am having a really tough day as it is often related to how much I have been doing- not always but it is nice to feel a little in control!
Remember that stressful things count as REDs. they increase RA by 10% for each one (according to my rheumatologist)
Another thing is to try and stop the pain building so much- the peaks and troughs are a struggle to live through and can be addressed by taking long acting morphine (zomorph) when things are bad and taking co-codamol or similar as often as you are allowed to.
Getting decent sleep routine, going to bed at a set time and relaxation techniques (i got one for my ipod!) all serve to help and are worth asking the OT about.
There is a lot to this RA- few realise!
I am going to try and put in something that is for me each wk. At the moment this is attending a Mums grp when Bernice is doing wiggle waggle
Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Welcome Alison,
Welcome to NRAS and the forum . Sorry you have RA but it is an exclusive club. There is always someone
here to help you.
I am Rose from Somerset, 56, worked in management. However due to stress of work I have been off work
since mid March. In April my Doc signed me off 6 months. I was diagnosed late 2008 and tried mtx 3 times
in 2009 but without sucessful as upset my liver. When I was signed off my BP was very high that has now
been regulated so 2 wks ago start leflunomide - fingers crossed (although getting head aches). However,
I am afraid FATIGUE is awful and apart from pain it certainly follows very closly.
As others have mentioned, you do have to try and 'spread' the load so to speak. I know if I have a
busy day such as washing, ironing, and also shopping. The next day I will be laid up.
Good luck and keep in touch
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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don,t give up as i could not do anything .I went from working full time to an old lady in a wheelchair who could not walk to the gate so we got a chair . Now on MTX I AM RUNNING ABOUT .took 11 months to be able to walk any disance or to do any thing . now i am driveing swimming doing garden looking after oldies all sorts never went back to work but life is ok . christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Alison,
Fatigue is incredibly debilitating and certainly the one part of RA that needs probably the most management on your part. Once your meds are sorted and working for you, the fatigue should diminish too but will always be something you'll need to keep a handle on.
Jenni's traffic light system is a very good way of visualising your energy usage and soon you'd get a good feel of what works for you. My Rheummy department runs a very good fatigue clinic that I benefitted immensely from ... it may be worth asking your team if such a clinic is available to you too.
Hope you manage to get some support at work
x x
Joanna
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Hello Alison, I,m sorry that you have RA, it is early days for you yet and it is good to try to stay positive. We are all so different and if the meds work for you then things will get better. I'm 56 and managed to get back to fitness running and walking coast to coast. I wouldn't be able to do that now but I haven't given up that I won't be able to do it again. It depends on many things and I hope that things go well for you. Glenys.
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Allison, Welcome to the forum, I'm Lorna I have had RA for almost 3 years and was on the triple therapy in the beginning. Now on MTX, Folic Acid and Hydroxochloroquine I keep really well all things considered. I am married to Ken and have 3 daughters and still lead an active life BUT have to pace myself not to do too much each day or I wilt for the next two.  It is not easy coming to terms with RA but it does get easier in time. Plan things to make you happy and enjoy things without putting yourself under too much strain to begin with. Look forward and try to remain positive it does help. Thinking about you Lorna xx
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Alison,
Yes it came as a complete shock to me to, I was diagnosed in May this year after suffering for nearly a year with the pain., however when I joined this forum it really helped me. As a foster carer I can appreciate how stressful your job is, but pleased to hear you have asked for advice and guidance.. I am pleased to tell you that after 8 weeks of taking 20mg MTX weekly I feel like a difference person, the tiredness hits me for 2/3 days after taking my dose then I'm back to normal. All the best.
Anne x
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Rank: Member
Groups: Registered
Joined: 6/14/2010
Posts: 23
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Hi
It seems we were diagnosed about the same time. I too was very active and am struggling like mad to get this 'balance' right, between pushing myself to keep active - because after the initial stiffness and pain ware off, it does help sometimes to keep walking. But, I find I can only do a third of what I used to. Keep plenty in reserve.
If you've got work dates coming up, try and rest as much as possible beforehand.
It might be an idea to say to people you are working with, that you're not terribly well, so please listen & bare with me whilst I get through this period.
At first, I thought it was the methatrexate that was causing the fatigue - but, it's the RA. I wonder sometimes, if my body's been trying to tell me to slow down for some time and I've pushed on & not listened....? Now, it leaves me no option! I'm sleeping an awful lot. It may just be the heat at the moment too - all the histamine floating around...?
I can only hope, like you, that this fatigue does lift & soon! Others tell me to just be patient and let the medication work....
Very best
John
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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I must confess, I was never very active in terms of walking, exercise etc but was in terms of working and playing lots of physical games with my child. I must confess though - I am absolutely rubbish at fatigue management. I still work but find I don't have too much more energy after that. I don't know if anyone has ever seen the film 'Finding Nemo' - but there is a fish in it that when she is scared or unsure - she says 'Just keep swimming, just keep swimming'. I feel a bit like that. We should be given lessons. Apart from the information Jenni posted on the Spoon Theory - I have never really had any advice on this.
Julie xx
PS - may sound really strange, have only seen the film because I have a small child but one or two of you might know what I mean!
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Rank: Newbie
Groups: Registered
Joined: 5/25/2010
Posts: 2
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Thanks to all who took the time and energy to reply.
It's been the first time I have had any real contact with those that are fighting the same battle as I am. It was enormously comforting to hear such kind words of support and some real advice from those who truly know about the impact of RA.
Since diagnosis, I have been doing everything to fight against this disease. I have tried to push myself to keep going, relinquishing only the activities that I know for sure will do me harm, such as my running and golf. However, I have been left feeling utterly exhausted and sore. Even in hospital waiting rooms I find myself wanting to put on my works ID badge to show to all around me that I'm not a patient but on a work related activity. Rediculous, I know, and not at all honest but I feel that my whole identity has been hammered with this RA.
I will make a real effort to stop fighting against this fatigue (and disease) and try to pace myself. Hopefully things will start to feel more positive and manageable.
Thanks Again and I wish you all well.
Alison
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Alison,
I wish you well too and hope that you can find a balance of work and rest.
There are a few who are content to give up on life and sit and do nothing but worry about their illness, but most of us try to deal with it and get on with our lives.
I don't work now but can understand anyone not wanting to give up their job as it is part of their identity.
Even at home, I am determined I will at least do my own cleaning ,washing etc ,admittedly at my own pace but it makes me feel I am still useful.
With things like gardening, I have learnt to do no more than 30 minutes at a time and with that I can cope. Any more and I am wiped out for the next few days!
As time goes on you will learn to pace yourself and not overdo things, and know when you need to rest etc., and how to save your energy for something you especially want to do. You will learn to be in charge of the RA, and not let it take charge of you!
Love and hugs, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Very wise words Doreen xx
I think regaining control is the official secret to coping.
Alison, I'm going to be blunt - the fatigue does not go away - but we can learn to manage it in a way that is right for us. This took me ages to work out with two small children at the time of diagnosis. They are growing up now - the eldest has left school today!
My family help me a lot - but this has taken time, I remember leaving strategically placed leaflets already opened for my husband and others to read.
I work in social care / management. It's not always easy but have you got the booklets for employees and employers? There is also one specifically about fatigue. I've found these very helpful - if you need some they are available via NRAS website.
I think there's much more research needed - personally i find emotional stress can lead to much more pain and problems for me...
This group is great and has helped me gain further control over RA. I was diagnosed late 1990's but only joined last year and I have found it's so supportive
Julie, That fish is Dory and i LOVE her! She suffers with severe memory loss and extreme anxiety - my sister has some memory problems and as soon as we saw the film we fell in love with Dory - she's just like my sis and the phrase "Just keep swimming, swimming" is now a family phrase for us and has helped us keep smiling thru' several difficult situations xx
Love and hugs to Alison and all love from Liz xxxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 872
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Oooh Alison,
I forgot to mention "Access to work" - vital for return to work / support with equipment etc. Information available via Directgov website.
(I'm on Sulphasalazine too, finally have accepted this works well for me)
Please stay in touch, hope your employers are supportive towards you xxxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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 I love that phrase too, "just keep swimming, swimming," it describes our situation so well at times! (or most of the time!). Perhaps we should adopt it as our official motto! Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello Naomi, this is for you! how to be a velvet bulldoser
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Rank: Member
Groups: Registered
Joined: 9/20/2012
Posts: 23
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Hi Alison, Like you I have recently joined this forum and was so surprised by all of the lovely replies. I was diagnosed in April last year and felt as if had no control over my life any more and all the things I loved to do had been taken away. I have to be honest and tell you I am still struggling as the meds tried so far , Methatrexate and sulphazaline have not got my RA under control and am at this moment in a flare. I am a very positive person but the tiredness and uncertainty does get me down. I hope for you and me this forum will help us to get to a point where life gets back to some normality and from what everyone here says, its a different life but it can be good so lets both hold on to that thought  I found resting hard as I am a very on the go sort of person but have had to pace myself and listen to my body. I have just seen Jenni B traffic light system and am going to try it. Take care and thinking of you , its a good feeling to know we not alone anymore . Julie Boo xxxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thanks for that Jenni. It looks like the fatigue is just something that I need to accept and work around. I find it so hard as I used to be a really busy person and I achieved so much in the past. I have an industrious personality and I get terribly frustrated when I can't do all that I want to, not to mention feelings of guilt and that I must be 'lazy' (totally silly I know!).
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Naomi, that's not at all silly, I feel guilty too if I'm not doing anything. Always used to be on the go doing something industrious, now some days I just need to sit, it's taken me a while to realise it and as I said it still makes me feel guilty, so you're not on your own.
Mary x
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