Family struggle with my condition as it's got worse

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Hi all, I am new to the forum and I wanted some advice. I've had RA for around 5 years and was diagnosed 2 years ago. I was on Methleotrexate (unsure if I spelt that correctly) but came off it in January due to the side effects making me poorly. Since then I've been waiting to get onto a new set of medication and as a result my RA has got worse. I'm now not active much anymore as the swelling in my knees is extremely bad and walking it hurting. My wife is finding it difficult as I've lost all motivation and she has taken on the bulk of house work whilst looking after our young child. Is there anything I can do to get my motivated and picked up from being this down? I've been advised my new medication will arrive in 3 weeks but not sure my family can cope with me much more.

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  • Posted

    Hi John.  Sorry you are having such a bad time of it.  I also was on Methotrexate and had to come off of it.  For me, the things that helped me most was to avoid dairy (that causes inflammation) and to try and move around as much as I could every day.  That helped with the stiffness.  For a long period of time I had to do the dishes in stages and sit down in between and gradually work up to being able to doing them all at one go.  Just do what you can and rest when you need to. 
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  • Posted

    Hi John, are you taking any painkillers? These can reduce the pain. Find the right one for you. Hot pillow/shower can help. Moderate physical activity (yes I know how it sounds, but trust me it helps). Don't overdo - over exercising makes damage to the joints. Moderate one increases flexibility.

    Avoiding certain food such as diary, red meet, carbs, white bread, tomatoes, cabbages is believed to help. On this diet for a while. Not sure if it does help, although taking off tomatoes seemed to do something. What works for me is the knowledge that some things need to be done. Set a goal and just stick to it.

    Rest a lot. A day in bed can give you energy for a full day afterwards. Your wife and your child are going through a tough time but so are you. Guilt never cured arthritis. Rest did... I don't know how old your child is, but I am sure that there is something that you two can do together. As well as some house keeping. Consult your wife. She is on your side. And she knows you the best smile good luck

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  • Posted

    ahhh ahhh your story makes me sad too.  

          My knees are horrid today as well, but moving does make them better.  Do look up RA and exercise and-- very slowly--get going.  It really will help.  One site suggests tai chi, and you can find tai chi exercises on youtube.  You should begin to feel better.  Sometimes I just sit and "walk my legs".  The trouble with being immobile too much is that  you get weak, and then are at risk of falling, so try some strengthening  and balance exercises as well. If your family sees that you are trying to get better, they might be more patient.  

          My sister asked my late mother how she managed to go swimming every day.  Her answer:  I don't give myself a choice. 

          You can surely read to your young child, even if you hurt, and watch that he/she doesn't get into trouble, as children so often do.  That should help your family.,

           Smiling and lots of thank you's helps everyone.  Do apprecriate the housework your wife is doing with lots of praise.

          Other things that might help:  statins are powerful anti-inflammatories.  Hot peppers are also the anti-inflammatories in the way of food.  Get some tabasco sauce! 

            

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  • Posted

    Hi John 

    i was sorry to read of your situation and hope your new meds arrive soon and that they work well for you. I wonder why they are delayed and whether there is any pressure you could bring to bare on your doctors or pharmacist here? Maybe others will know better than I. 

    Regards your family, I don't know if this may help in terms of how you are felling presently but I live with my mother who has RA. She is 84 and I'm 53 and we are very close and all each other has as we have no other family. My mum gets very frustrated and upset, not to mention the usual obligatory tiredness, as she can not do things she would like to. Plus pain of course! She gets upset too that things she used to do now fall on me, I work full time and we have home and two lovely dogs to care for. I get tired too and mum knows that. I've also had problems at work, job losses over the last two years etc and she worries that I'm worried about all that, if you see what I mean. As a 'carer' I worry about mum and wish I could do more to help ease her pains etc but on occasion, admits all of this, I get a bit snappy or grumpy but it's only because I'm angry my mum has this rotten condition. I'm angry that it makes her unhappy and that I can't put that right. So you see John, what I'm saying is that I'm never actually really grumpy with my lovely mum.......maybe it's the same in your lovely family. However I might sometimes come across to my mum, I always, always love her very much. What I try to do is keep talking to my mum, when she feels like it and when she falls asleep in the chair, and I feel a bit alone, I try to blame the condition and I always say I'm sorry if I'm grumpy as I truly mean it.

    i hope you get some relief and motivation back soon and that my reply helps in some way.

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  • Posted

    Hi John have you been in contact with your RA doctor about how much worse you are.He could give you a steroid shot to tide you over til your new meds come.keep taking painkillers regularly and keep moving.I know it's hard but you will feel more pain not doing anything.you can rest between trying to do things.even exercise while sitting will help. You don't want to get circulation problems aswell
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  • Posted

    Lots of good advice here, John.

    I have this to add, because it's being touted heavily on other threads and I've heard about its effectivness independently for years...

    I'm talking about that yellow powder we love to eat in our curries – turmeric!

    High quanities of turmeric are known to have anti inflammatory effects and could work for you while you wait.

    Just sprinkling a bit on your food won't do much though. Unfortunately you will need to buy the supplements in the very high doses needed from a health store. Not cheap but worth your while.

    I wish you all the best.

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  • Posted

    Hi John, I'm sorry to hear your in so much pain, I can relate to you and your family, I too feel terribly guilty that I can not do more to help and join in with family life.

    I am sure your wife understands and just wants to see you well. I have had a rocky time with meds also but now I'm on Humera and feeling good not great but so much better, so there are meds out there which will help,I also have started Yoga and this has really helped me especially my mind learning meditation techniques which are very helpful. I think you have to be proactive and try things out.

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  • Posted

    Thank you for all your kind words and advice guys. I do exercise in small parts on my exercise bike. I also take ibuprofen and paracetamol. The doctor has prescribed me some steroids which I hope will help.

    I am trying to be more active but it's often difficult. I do feel it's now more mentally than physically as I've been in pain for 5 years and I'm at a low point now going through this flare up.

    I will keep trying. Again thanks for all your advice.

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    • Posted

      Just want to endorse Enrica's suggestion of meditation....

      it has effects in all aspects of your life. Maybe you can even get your family members to sit in meditation too at the same time. Bit tricky with a young kid, I expect, but it could give all of you a boost.

      It does take application, though.

       

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  • Posted

    Hi John 

    Sorry you are feeling down.  Have you asked for a cortisone injection.   I was also hurting badly whilst waiting for my mtx injections to arrive (jury still out on whether MTX will help or not as not up to full does yet)  and I was given a general injection and it really helped.  It only lasted a week or so but it might help you feel a bit better short term until your own meds arrive.  Your GP could do it for you. I had it in my rear and it didn't hurt at all and helped lots. Well worth it.  Otherwise keep strong and get lots of rest. It is a confusing illness.  Good luck with the meds when they arrive. 

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  • Posted

    Sorry John, it does not get easier. I think you do need some form of medication. Everything I have read is that it may get worse if you do not. They may be telling me this just to scare me. It worked. I don't see why you have to wait for meds. Find a new doctor who can act more efficiently for you.
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  • Posted

     I can't emphasize enough how important it is to praise your wife for her help.  She needs to know her life and her work are worthwhile.  With a young kid, she is probably exhausted, so you can help by telling her how great she is.  

    On another thread I found out about IF ratings, or inflammation factor ratings.  Serano peppers, fresh, were the best!  All the hot peppers were really high.    

         Turmeric was up there but not quite as high.  (Do know a high number means it is strongly anti-inflammatory.)  I like turmeric, but it is quite sour/bitter so you can't put too much in a curry or you will ruin it.  I see they are now selling turmeric capsules, so I don't know how fresh the turmeric is inside.  I do rather like turmeric root which we can now get here.

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  • Posted

    Hi John,

    Waiting and hurting and knowing you can't do what you used to do around the house/with a child is awful. My husband & I have been going through this a lot this year, and it's so hard. We had to sit down and have an honest discussion. It was decided that we need my income for now, and the understanding is that I HAVE TO rest in the evenings so I can go back to work the next day. We always said we would do things equally, but right now I cannot do housework. So it's like 80/20 with him doing pretty much everything. My husband was frustrated at the beginning, as were the kids, as was I, but over time we've made adjustments. We all still have our moments with it though.

    Depression is a very real "side effect" or co-problem with RA. I admit it feels miserable to do it, but you might consider calling your doc & asking about an antidepressant. You don't have to take it forever, but it can help while you're in this rough spot.

    Another thing (non-drug) that you can try is "grounding." It was originally developed to help patients with PTSD. The idea is to re-center yourself and stop those worries & spiraling thoughts. It is very easy to do but like any skill it takes a little practice. In fact it's so easy I've been teaching it to some of the young kids I work with. I find it much, much more effective than relaxation & breathing exercises (and the kids agree with me!). There's plenty on the internet; just Google it. 😊

    Remember that you're experiencing a loss right now (of your former ability, perception of former self, & probably former dreams/plans). Your wife is also experiencing a loss, just slightly different from yours. It's hard. Give yourselves some grace!

    ~Karen

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