New to all of this.... feeling guilty

Hi there

I have been struggling for about 2 years with RA symptoms, my GP thought I had Lupus initially but Rheumatologist has ruled that out and confirmed RA. I have been on Hydroxychloroquine for 18 months...not sure it has helped at all.

Having recently had more severe symptoms and following 6 weeks on steroids I am due to start Methotrexate but am concerned, if I am honest I just wish it would all go away. I worry for the future, have taken my second occasion of work in the last 3 months, having previously never had time off work, pretended I have a migraine but the truth is I could not get out of bed, my hands, elbows, feet hurt like hell and nothing touches the pain.

I worry about my ability to continue to work, it wipes me out completely, I can just about get through the day but only if I do nothing else when I return home, I have no energy for the weekends at all and I fear my husband is getting a little fed up of it now, which I do understand.

How do others cope with it all? How do you push yourself forward, get up and carry on, right now I really don't feel able to and that is not like me at all.

Apologies, my first post appears like an opportunity to moan, I really don't mean to, it's probably also a little confusing!

Any tips on coping strategies would be good. Has anyone tried the Paddison programme? I have been trying Paleo on and off with varying success for some time now. Would be good to hear your thoughts..

Many thanks

Karen ☺

14 Replies

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  • Hi Karen the methatrexate usually works wonders. It's the best thing my husband has been on for years. As women we feel guilty resting, but believe me this is the only thing that will help you. Fighting the pain and carrying on will just make the getting better longer and more difficult. I dont know why we feel so bad when we rest mabe we think. This needs doing and I haven't done that in the house but tomorrow is another day also next week and month. Rest when it hurts, and ask for help, my son's are 30+ and they can remember helping us both. They have both grown to be kind conciderate all rounded nice young men.. ♡♡♡♡ GOOD LUCK

  • Thank you for your reply and wishes... I will certainly take heed ☺

  • Moan away Karen....until you've been there it's hard to understand how RA can wipe you out.

    I tried to push myself when I felt really felt poorly and in the end I realised I just had to slow down, take every day as it comes and find a drug that suited me .....stressing & trying to 'act normal' doesn't work with RA I'm afraid.

    As for the Mtx...go for it.... If someone told you, you'd be back to 90% normal for the next 7 yrs,you to take it wouldn't you?

    Well that is what happened to me & you will see as lot on this site who have taken it successfully for many years. You might struggle a bit at first, but no pain no gain as 'they' say! ( Who they?)

    There appears to be no rhyme or reason to RA meds.....some work for you, others make you wish you had never been born ...but eventually you will "the one" for you.

    So start Mtx...explain to your husband you may get worse before you get better, but say you are trying , along with the rest if us on this site, to deal with the hand we have all have been dealt as best we can!

    Hope you get some relief very soon!

    AC

  • Hi there

    Thank you for your response and advice, certainly worth a go... not that there appear to be many options... will prepare my husband for the next few weeks ☺

  • I'm sure he will step up & help once he understands you will be back to your old self as soon as you find " your" magic potion.

    In fact Karen if Mtx isn't for you, there are lots more Dmards, so don't start stressing if you are really queasy when you start taking Mtx.

    I used to take it night with a large glass of water, .& don.t forget the 5mg Folic Acid everyday except Mtx day.

    One way or other you can will get sorted.

    Trouble is ...not one if these incredibly well qualified rheumatologists can tell us WHEN,

    I hope Mtx works well for you.

    AC

  • hi karen This is a hard one we are all different some days are well decent i wont say good Then their are the bad days you want to do nothing cos your legs wont take you their. But you have to keep mussle power or as the saying goes if you dont use it you loose it. So i would say its most important to try to pace yourself and still keep the bodys strength up in mussle power however that may be like have a look for some exersises on u tube.

    On bad days it a play it cool look and know your limitations but try to do a bit that your body allows. I can only say what i have i have had 4 times now each lasting a period of ranging from 12 to 18 months Every time i get it the mountain get harder to climb before you start coming down the other side at the moment im struggling quite a bit. And all bloods have come back normal as usuall So i would say know your limitations and dont ever give up.

  • Thank you for your response and advice, really appreciated. Hope you to feel better soon x

  • Hi Karen

    Try some Camu Camu and krill oil. Along with the treatment the consultant suggests.

    Wishing you a speedy remission xxxxxx

  • Hi there

    I haven't heard of either but I will certainly let research it, thank you 😊

  • Hello there!

    In response to your question about further info about the paddison program, I have recently replied to several posts regarding dietary changes and things that have helped me to feel more energetic, more positive in my mindset and generally more healthy. I do not follow the paddison program, but I do follow what I assume are very similar basic principles.

    If you're interested, you can access these responses/posts that I'm referencing simply by going to my profile and clicking "responses." I believe at least the first 4 or so are regarding what I do to manage my pain and inflammation with diet.

    Try to keep in mind that each body is different, and what works for one person, whether it be a dietary restriction or addition, DMARD, corticosteroids, a biologic or simple supplements, no two people will react exactly the same! Using others experiences to gauge what you should try next is a great way to learn to try new things, but be careful about the way in which you judge their success and try and give each time. The best thing you can do is learn what your "best" is, and write down all the things that help you feel more like your best.

    I hope this helps. Best of luck to you, and I hope you find relief soon.

  • Hello there

    Many thanks for your response, will certainly review your previous posts, thank you 😉

  • Hi Karen, I've been eliminating things from my diet that have flared me up. You can look it up on how to do it. It's called the "elimination diet". Everyone's body reacts to different things, so u have to really listen to your body & keep a diary of everything u eat & drink. It seems to be working pretty well. My inflamation #s went down to normal. But I am not in remission. I hope I will be, but I feel much much better. RA has put me into a wheelchair because I had it so very bad. I live with my sister & brother. They help me a lot. I know what your talking about because I often feel like my family is getting fed up with all my pains. They have reassured me that there not, but I can feel it. They think I should go talk to someone to help me sort out my feelings. I'm thinking that I might do that. I wish so much that I didn't need anyone's help. I use to be the nurturing one that helped so many people. Now I'm the one that needs the help & im not liking this at all. I cry a lot at times. Your letter really hit home to me. I'm doing better, but if I get off my health diet even the slightest, those horrible flare ups come right back. You may want to start watching healthy eating videos on line. Dr John Bergman is a wonderful one to start with. From there you will find others. He inspires me! So I try to watch his videos once a day. I hope this helps u. Hang in there. Things can get so much better. Just keep moving forward. Many blessings to you & your family. Richgirl🌻

  • Hi there

    Thank you for your reply and kind words. I hope things improve for you to moving forward. ☺

    Have researched the diet, will certainly look at more, thank you.

    Best wishes Karen x

  • Thank you Karen. Maybe we can help each other along the way.😊

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