Losing my mind

My name is Maritha, and I am new here. Just looking for some compassion I guess. Recently diagnosed with ra. Got the medicines, but haven't seemed to help much, but I admit the tramadol has helped make the days bearable. My problem is that everyone, even my husband thinks that I am making this out to be more than it is! Not true! This hurts! I get flares that knock me down for days. I am 57 too early for life to be this....limited!

20 Replies

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  • Welcome😊Sorry that you've has to become a part of our exclusive gang though 🙄

    You're right: it hurts like hell and knocks us all for six! Hopefully things will settle down soon for you. Rest and move - weird but helpful lol. Try not to let things stress you if possible. It takes everyone a long time to get used to this unwelcome visitor - Keep talking about how you feel though as it something that will effect all around you- Sending a virtual hug 🙌

  • Hi and welcome to the gang! What sort of drugs have you been given because it seems the DMARDS take ages to work - 12 weeks is quoted for the methotrexate I'm on. As for the pain, well, I've never known pain like it! I have three children, had a lot of tooth abscesses, burst eardrums, kidney infections amongst other stuff and, believe me I'd rather have all of those at the same time than watch my hands double in size and being in the agony it brought. Burning broken glass could not have hurt more and I have cried from the sheer frustration of being unable to function. Might I suggest those who disbelieve your distress go to the NRAS website and read some of the literature? Aren't they lucky they don't have it too?

    Jan

  • Hiya & welcome Maritha. I'm sorry you've received the diagnosis. I would say it does sound as though you're not well controlled if tramadol is making the day bearable, your RD meds should be doing that really. You don't say how recently diagnosed you are but given that DMARDs can take up to or sometimes longer than 12 weeks to become effective it could be if it's only weeks rather than months that could be the reason. I'm sure it seems an awfully long time waiting this is why, as well as our DMARD(s), some Rheumy's also either prescribe a short course of oral steroids or a general steroid injection to bring the inflammation down & with that the pain. NSAIDs can also be prescribed, again to ease inflammation & pain.

    Don't be too hard on your husband not understanding, without feeling your pain there's no way he could, it's called the invisible disease for just this reason, we can look fine but inside every joint is screamingly painful. Did he accompany you to your diagnostic appointment? Often this helps partners or those closest to you understand a little better. Some don't understand the differences between Osteoarthritis & Rheumatoid Arthritis either, one reason some of us (& medical teams) have chosen to call it Rheumatoid Disease (RD), to separate the two. Maybe the two of you having a look through the NRAS site would be helpful nras.org.uk, it might just hell him understand how things are for you now. There are also downloads, some relative ones you'll find here nras.org.uk/emotions-relati...

    If you have any questions, would like experiences or would just like to chat with others in the same boat we're here, whenever.

  • I'm losing my mint to lol, What I have in my pocket is a bag of marbles and then if I feel daft I look for my marbles.

    You'll be ok

  • Welcome to the gang that everyone of us did not join willingly. Everyone is right . You will get used to it and things will not seem so bad. The problem is you cannot see this disease and to everyone else you look normal. Only two or three people know when I am having bad days. I am quiet and my husband says I loose my colour. Your husband will eventually get the message. On bad days I always have my NRAS friends and they always give words of encouragement because we ALL know what this is like.

    Big hug to you.

    Patsy 57

  • Alot of times husbands do not know how to react, they tend to be rescuers and if they can not fix it or take it away they sometimes just appear to not get it but inside very concerned and scared. I went through it when I had Breast cancer and it was a hard time for me as all I wanted was to be held and told it will be okay. Alot of people unless they are walking the walk of pain, it is so hard for them to understand. Just try to continue to love him and find people on the forum and people who do know how it feels and the struggle you have. I am a healthcare aide and my Son recently was diagnosed with AS but doing alot better , but also have seen alot of pain and do get it. I have Arthtitis as well, but most days okay.

  • It can take a long while for the drugs to show results. And also for other people to understand that this is a serious disease. Most peoples' ignorance doesn't bother me, but I am glad to have my husband on my side. Even though this is a very testing time for you don't think of yourself as helpless. The disease won't prevent you from slowly 'educating' your other half. It won't be easy but you'll get there. To be fair I have found that having a chronic disease myself has shone a light on the struggle other people have with health problems, problems that I completely overlooked before.

    Life goes on. At first, with the shock of diagnosis and waiting to see some improvement, it can feel as if we're excluded from life. But you will be able to re-make a good life for yourself if you're determined to. Baby steps at the moment perhaps .... but it all adds up. Feed him a little bit of info at a time perhaps, tell him that he just doesn't get it and you understand why that is, but ... tell him you need him to be your ally. You know him best so you'll find a way to get through.

  • Have you joined NRAS? I found that getting my partner to read the magazine worked well - he kept saying things like "I had no idea" and "Do you get this?"

  • Isnt that the truth, when they read it from someone else or hear it from others they all of a sudden realize oh really.

  • Hello and sorry you have to join us. I can only concur with the previous posts. I suggest that if all else fails, bangade up every joint that hurts you, to make it visible to all. It's amazing to see the effect that can have. All the very best and stay in touch.

  • That is a very good idea - I can imagine this to be highly effective !

  • Hi Maritha - You have every right to be frustrated by the reactions, but please know that the reactions of others are normal to this disease because you "don't look sick". There are brochures on the NRAS board I think (I couldn't find them but others may be able to point you to them) that explain it succinctly. Maybe your Dear Hubby (DH) would read one of them for how serious and painful this disease really is?

    You are welcome to vent here any time, and I hope you are feeling better soon

  • hi Martha - big hug 4u. Yep - 'the hidden disease' - there are many, sadly. Get yr DH to help on little ? things: opening cans, screwtops packets, plastic packaging rtc. Then offer omelettes for dinner cos u can't cut up meat etc etc. sounds drastic but it does get thru', after drpped casseroles, trays of food etc [not on purpose] mine has realised a bit more. good luck - there are still good days, good laughs along the line xx

  • I know we have a few members who have joined on behalf of their partners. I wonder whether any of then might feel able to relate their experience here? Presumably some just didn't get it at first, it may have taken them a while to realise how the disease affected their partner, how debilitating and depressing it can be.

    It's useful for a partner to read about the experience of those who have the disease but to hear how the penny dropped, whether suddenly or over time, for other partners could be especially enlightening.

  • So true, I have learned so much from this form. Wanted to know more as when my Son was diagnosed with AS as a mom it is hard to see them go through it. I am fortunate that i do have some back ground in inflammation and very involved with essential oils in how they are such a compliment to assisting inflammation.

  • I couldn't believe how I went from being active to pain either. The trouble is we look the same as always. I have to say a lot of people knew me well enough to know I wasn't faking. People realized this was serious also when I needed a shoulder replacement.

    I am now on Humara, plaqunil and methotrexate and after 2 years I feel better. Each medicine takes time to work.

    Almost as frustrating are the people who think they have RA too because one joint hurts. I just tell them they need to check with their Drs.

  • I haven't much to add except sorry you have to go through this Maritha. My first husband was so disbelieving of my pain early on that he emptied the capsule of Indomethacin he gave me at bedtime - to see if I was faking! He got the message when I couldn't move the next morning and he had to take care of our baby! I hope your husband will research RA and realise the value to you of loving support and a non judgemental attitude. It's almost as hard for our partners as for us I think. Would your Rheumatologist give you a steroid jab to see you through until the DMARDs work? Worth asking maybe.

  • He did what? 😳😵🙄 Gave you an empty capsule of medication to check if you were faking? I take it by 'first husband' he's no longer around? Not. Surprised.

    I hope the second one is less of a t&£@.

  • Afraid so and yes! I guess it was his way of being sure. My husband now knew what he was 'taking on' and is kindness personified. I've been really lucky. It makes all the difference.

  • I'm glad you found a good one.

    What some people will do, unbelievable.

    🙏🏻

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