Early days with RA

topcat
topcat Member Posts: 8
edited 18. May 2014, 07:02 in Living with Arthritis archive
Just diagnosed with RA (or "some other form of inflammatory illness") about 6 weeks ago so just some thoughts in these early days:
1.Hydroxychloroquine.
Too early to say it's working yet but I have noticed my weight has dropped (through loss of appetite) by about 5-7 pounds so far.
Is this usual? I was 12 st 2 lb and am now 11st 9lb.
2.Exercise
Too tired to do cable exercises as I thought I might do.
Instead, I have tried press ups with small stands (like irons) to avoid wrist flexion and initially it worked but today some discomfort/excessive aches in wrists with 20 press ups done last night.
Still,more positively,plank exercise for abs is fine-so far.
May go to local gym and see what they can offer with cycles and rowing machines but I am not convinced my tiredness will push me through the front door to go.
3. Tiredness.
Still no relief there.
4. Hot baths.
Always liked them but now I have them 2-3 times a week.They do seem to give relief from the aching joints but only for an hour or two.It's still worth it.
5. Family
My daughter has no real understanding of this illness and at times I catch myself feeling resentful because of it.I have tried to talk with her about it but she seems to exhibit somewhat of a closed mind that I have found surprising in her.However,I do know she has her own life and problems with which she must deal.
My wife is struggling to deal with her own clinical anxiety and needs me more than ever to give her emotional support but perhaps understands matters viz. RA better than daughter as she lives with me.
As I said,early days yet.
Sorry to ramble on.
Take care everyone.
Topcat

Comments

  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    Hi topcat. I'm struggling a bit myself today so, very briefly, don't ask too much of your body. Exercise is good but it has to be the right kind ie stuff that doesn't put additional pressure on already dodgy joints.

    I've never lost weight on hydroxy but have lost it when in a flare.

    You have a lot of stress there and that's not good for arthritis. Maybe your daughter doesn't understand: maybe she doesn't want to understand if you've always been the strong Dad. Try googling The Spoon Theory to show her or just download some of Arthritis Care's publications.

    I'll try to get back later.
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Hi Topcat,

    I wrote you a long reply sharing my experiences with our children & their attitudes to me becoming ill after their Dad already was etc but I lost it all & my wrists hurt too much to rewrite it, I'm sorry!!

    I do think ure body is begging you to let it rest, I think perhaps ure exercise regime could be a bit too regimented, maybe some time off or a switch to something else may benefit you more? Swimming, Pilates or yoga maybe!

    Regarding ure fatigue, again I caution you to listen to ure body!! All of the guidelines are fantastic but they are only guidelines. We need to listen & adjust to wot our bodys are saying.

    Good luck.
    (((hugs)))

    Xxx xxX
  • topcat
    topcat Member Posts: 8
    edited 30. Nov -1, 00:00
    Thanks for the responses so far.
    I did forget other things as I made my original post just before going out with my wife on this lovely sunny day.
    1. Tiger Balm (Red).
    I have some difficulty sleeping often waking with pain or discomfort around my neck.
    Tried Nurofen Plus one night with Tiger Balm and it seemed to help.
    The next night I tried the Nurofen alone and not much help.
    The following night, I tried the Tiger Balm alone and it worked,taking perhaps 20% of the pain/discomfort away so I get a couple of hours extra sleep.
    (Nurofen Plus has codeine in it anyway so best to stay clear of it if I can).
    2. Shoes
    My resoled Doc Marten shoes are OK so far but leather soled Loakes do cause discomfort so will probably have to seek out Hotter shoes from now on.
    3.Acceptance
    This is the area I think other posters touch on:the philosophical acceptance of a changed life.
    If I can exercise then I probably should but if I can't then I shouldn't and should learn to accept it.
    My daughter and I will come to terms;it's early days for her too.
    My main worry in life is not this illness but rather my wife's poor health and I hope that will improve sooner or later.
    Why should I have RA?
    Why me?
    Why not me?
    Perhaps acceptance is the key.
    4. Yoga?Tai chi
    Trying to get my wife interested in attending a Yoga class together.I've never done it and nor has she although she still tries to attend her weekly Pilates class.
    Does anyone have any particular preference/knowledge as to what might be best for RA?

    I know what you mean about wrists aching with typing.Just typing what I have done is making my fingers in particular sore.
    Goodbye for now.
    Topcat
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you but I am sorry you have had to find us. I have PsA (psoriatic arthritis) and that has led to osteo in a number of useful joints. I have completely forgotten what it's like to have energy, I go to bed tired, don't sleep that well thanks to pain, and wake tired. Some days are relatively easy (today has been so far, awake since five and out and about from 9.30 until 1.30 ) but this afternoon will be very sedentary to give my joints some time to recover.

    Those without arthritis don't understand what it's like and why would they? My husband has been living with me and my arthritis for over seventeen years now and is still surprised to learn that I am in constant pain - isn't he lucky he can forget? :lol: I don't bang on about it because there's nothing he can do to help. I take my meds (I am on a triple therapy for the PsA) and keep the pain dullers to a minimum because I prefer to be alert and feel the feedback so I know to slow down or stop activities. I used to enjoy walking and cycling but can no longer do either - getting showered and dressed is exercise enough. :wink: DD
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi;

    I regularly drop 10 pounds during flares of PsA. I guess it's mostly lost appetite but sometimes I'm not sure why I lose so quickly. I mostly gain it back after the worst of the flare. I had this before I started hydroxy. 1.5 years ago, so I don't think mine is drug-related.

    I constantly struggle with exercise. I get weaker the more I do and then there is the fatigue- monstrous. If you can, try not too lose your current level of fitness. It's very hard to get it back :cry:

    I used to do better with exercise and went to a regular tai chi class. I found the rhythm of the set really helpful, and I kept up pretty good fitness with it. Then I stopped :( and I lost quite a lot of my fitness. I liked chair yoga, but unfortunately it aggravated my back and neck, so I don't go to class anymore. I really recommend tai chi, I love it. I just need to get back to it again. I found it demoralising not to be able to keep up with the class so need to find one geared to sick people. Swimming is good too and, there's the hot pool for soaking in after :)

    It's a real struggle to achieve acceptance; it comes and goes, and I keep trying. There's not really a permanent state to this, although training yourself to find positive solutions to your problems seems to help.

    Other people don't understand these illnesses, that's a constant.

    Best wishes,
    Anna
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi, welcome from me! I'm on Hydroxychloroquine for Inflammatory Arthritis, I have had a loss in appetite and also loosing weight, my G.P is fine with it at the moment but is going to keep an eye on it. Tiredness! Well what can I say!! I try and have a siesta now in the afternoon to help with it, it does help. Acceptance well that takes time and it takes time for your family to come to terms with as well, my OH still finds it hard and it's been over 15yrs for me!!! As for over doing things and getting pain, well my motto is listen to your body it will tell you when it's had enough and needs to rest. Welcome again topcat. :)
  • topcat
    topcat Member Posts: 8
    edited 30. Nov -1, 00:00
    Hello again and thank you to the recent posters to my original post.
    The point about finding it hard to regain fitness levels once gone is,I suspect,all too valid;it's hard enough as we age regaining fitness after long layoffs for whatever reason.
    Perhaps my wife and I can look at local tai chi and yoga classes and see if we believe one or the other is a "starter" - much depends on her psych state.
    Had a bit of a flare late evening yesterday:felt hot,aches increased everywhere and difficulty sleeping - tired just typing this so goodbye for now and thanks again.
    Topcat
  • barbara12
    barbara12 Member Posts: 21,164
    edited 30. Nov -1, 00:00
    Hello topcat and a warm welcome from me.. :)
    The others have given you lots of advice so I will just say you stay with us and get lots of support off the lovely people on this forum..hope today is not to bad...
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    In my experience of these things you don't have 'a bit of a flare' - I reckon that was just your body responding to the day's activities. I am currently enjoying my payback from yesterday's activities, I did a little too much driving and walking so today comes the reckoning. I feel that the term 'flare' is becoming increasingly misused and currently you are not taking any really heavy-duty meds; hydroxy is one of the mildest DMARDs around and may not have the necessary clout to bring matters under control. My first med was sulphasalazine, then methotrexate was added and over the years various combinations of things tried. We all react very differently to the drugs and it can take time to find the best solution for you. One thing is for sure though - the label may change but the drugs won't, they are used for all forms of auto-immune arthritis.

    I once had a flare that lasted three months (I was off all the meds at the time) and lost three stone despite a diet that consisted mainly of sugary Coke, Hula Hoops and good quality ice-cream. My weight reduced but the pain did not. :) DD
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    You might find this helpful re fitness http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/Healthylifestyle I think we probably have to re-adjust our ideas on what exactly is involved with 'fitness'. I do three different types of exercise daily but that's in order to maintain the movement I have and keep muscles and bones as strong as possible. It bears little resemblance to what my husband does on the golf course or gym :wink: but it does work for me.

    As for your wrist hurting - yes, these are the ways our bodies tell us we have overdone things. I hope today is a little better on that front.

    It will all be harder for you if you feel you have to 'manage' your wife's health as well as your own. Would a chat with our Helpline people be of use?

Who's Online

3
Chasanne
Chasanne
RogerBill
RogerBill
+1 Guest