Struggling... :(

[KassieJade]

Hi, bit of background, im 24 and I have been diagnosed with rheumatoid arthritis and fibromyalgia, I also suffer with depression and anxiety. I am a single mum of one very gorgeous 4 year old and am pregnant with my second child. However lately im just not coping with the pain, the stress or the fact that these diseases are just going to get worse and ultimately make me and my family suffer.. Has anyone got any tips for how to cope? Im just feeling incredibly alone and bound to fail right now...

[Hidden]

Hi KassieJade, and congratulations on your pregnancy!

How long have you been diagnosed? I know that RA can be controlled pretty well and my daughter-in-law's fibro seems to be a lot better recently, after a few very difficult years. Having both diseases is not an easy number, but you won't necessarily get worse in every way and you could find that you get better in many ways.

It must be tough looking after little ones with these diseases. If I was a young Mum my rheumy would know all about it! I'd really be on his case, making sure I got the best treatment possible, including any referrals to others who can help.

It's so good you've joined and hopefully being amongst so many people who know what you're going through (kind of anyway, we're all different) will help a bit with your anxiety and depression.

[Hidden]

I second everything Postle2 has said - welcome to this community and hope things improve very soon for you.

[allanah]

Hi and welcome. Great news on the babies. Have you got a good health visitor where you are, they can often give you good support.

I think you are amazing keeping going so keep up the good work x

[magglen]

My dear, I am so sorry life is so hard for you just now. I wonder if you feel some counselling would help? It would not [should not!] be giving advice but be a safe place for you to off load not only the present problems but things from your past which have contributed to your depression and anxiety. Your GP may have [should have] a counsellor as part of their team. Otherwise maybe the RA department you are under has one. If not, if you can afford it, go privately. You are young enough for some emotional changes to work well

. Please don't carry this alone but find someone to off load on, someone who really knows how to listen

Modern medication for RA is very good so do have heart. All the very best xxx

[kirsty1987]

Hi what your saying don't sound to different to the way I've been feeling lately. I've had rheumatoid arthritis for a long time now. If you ever want to chat and just get things off your chest give me a message. Kirsty x

[Marz21]

Hi, I have sero neg arthritis and ulcerative colitis. My partner and I have a 20 year old and 17 year old, and a wee 5 year old! Have also been trying for another child, although sometimes battle with this plan as insanity, but still want it despite the health hurdles. Pain, not managing things, relying more on others and sooo much guilt as a result have quite literally changed my life. However, accepting support from many different places has probably been the turning point in how I have coped better. When diagnosed with the arthritis early 2012 I was, and sometimes still am, just struggling with the 'facts', and with a little one, a job with less than understanding people, and a great deal of ups & downs re mood, treatment, increased pain - life quickly felt impossible. I asked my GP for counselling, I went back and fore to physio constantly and went to OT for advice and assistance, and they came to my home too. All invaluable. I joined groups and found many wonderful people in similar situations who had great advice and kind words. I tried to help others as much as I could too. I chose to explain things as best I could to my older boy still at home, and my partner and have talked in more simple terms to my little one. Slowly things improved to a coping point, although pain & treatment still require some work! At work it got to a point where I had no option but to leave. It was both awful and wonderful. I started a degree course part time and my confidence has grown. I struggle with 'new things' cropping up most days which were once things I didnt need to consider. I have to find 'new ways' round, and sometimes have to just say I can't manage. Keeping up with sleep, and cutting things totally down into bite size pieces, asking others to chip in, taking more days to be home and doing low energy activities with the little one, although she is now in school too. Trying to manage pain and listen to my own body. It's sometimes utterly heartbreaking being in this skin, but with the help I have sought it can be more manageable. Maybe speaking with your GP or health visitor or finding out about your local OT could open some further support. Please don't feel alone. Thinking of you x

[cathie]

II'm sorry to hear about your diagnosis. However they do treat newly diagnosed people quite aggressively, meaning they get u on a regime of meds that should help a lot. I've had it for about 15 years and have been reasonably well supported until a misguided doctor made a bit of a mistake.

However, I'd say that the best things I've done have been to organise home so it's easier for me, we have a walkin shower, lever rather than screw taps and I've recently succumbed to a riser chair, which might help you. Children love them however! I'm a bit fanatically organised too. It helps for those exhausted moments. And seeing a physio has helped me to keep mobile.

We've a ten year old grandson and I miss being able to do the rambles I used to, but I've developed expertise in areas he respects and can relate to like cooking together and computer things. Drawin and painting on kitchen table have been great ways to share telling one another stories. So there's a lot that even quite ill people can still do.

I hope the medics can stop your ra from getting worse, but don't despair xxx

[Kathyk]

Hello, I am recently diagnosed with RA and was fearful of what the future might bring, especially when it seems as if only the worst case examples are on the medical websites. However, I have been reassured that many, many people respond really well to the drugs and with support from great people on sites like this, things may not be as bad as they seem at the moment. Obviously we are all different, but hopefully things will getter for you soon. Wishing you all the best.

[sammie83]

I to have been diagnosed recently with RA, i started the medication in March, i also have a 4 year old and a 9 year old.

My head has been through so many mixed emotions, anger, sad, lonely, scared, asking myself questions too, like "how am i going to cope with this"

" whats around the corner for me" the worry of my job, everyday life.

Then i stumbled accross this site which is fantastic, you have done a positive thing by joining and posting on this group, you will get no end of support, and the people are lovely. i've also recently come accross a local support group too, which i picked up a leaflet from my local library. The pain i find wheat bags, hot waterbottle, pain killers and elevating and supporting the joints with pillows, cushions help me. I hope you start feeling abit more positive and comfortable soon. Take care

[Lorraine_NRAS]

Hi

Just wanted to add to the comments made by the others and stress that we are all here for you and if you would like to talk to someone then perhaps you might like to call the NRAS helpline. We are here from Monday to Friday 9.30-4.30 on 0800 298 7650. The helpline team can also put you in touch with one of our telephone support volunteers all of whom have RA and understand all too well what it is like to be newly diagnosed.

Best wishes

Lorraine

[jlmack]

I was diagnosed in December with zero-negative RA and I'm a SAHM to 2 year old twins. Yes it is very hard. Period. I spoke with the NRAS helpline in February and asked to speak to another Mum with RA to get some tips. A time and day was chosen and we spoke for over an hour. It was great to speak to someone in the same boat who understood. I'm now further down the line, with RA that's still out of control. I've justap started Methotrexate injections instead of tablets along with the Hydroxychloriquine and every other pain relief I can find. I have a meeting with the senior nurse at my hospital to discuss biologics next Wednesday.

I find being a mum to 2 busy toddlers very hard. Speak to your GP and HV and ask them to refer to to Homestart. I was referred in December and my Homestart lady started her 6month stint with me in March. It is fabulous. She helps me in so many ways, giving me confidence, feeding the kids tea so I can rest and take pain relief with an ice pack on my wrist or help me to the shops or help at a music class. All very helpful. I'd highly recommend. It's a free service, run by volunteers with government funding. I know it's a case by case basis and some areas have volunteers and some don't but it's worth a shot! Always hear to help and listen and I echo what the others say. Rest when your little one is at pre-school too and ask for help/accept offers when asked. I am a very proud person and hate asking for help. But since my RA is not controlled yet I've needed to swallow my pride and if a friend offers to cook me some food....I say, Yes please 😀

[KassieJade]

Thank you all for your replies I was on all the aggressive medications when i was first diagnosed but unfortunately Methotrexate did not agree with me at all and I had to stop completely. Also with the pregnancy i have had to stop all medication other than useless paracetamol. I have been trying to find the support within my family but no one seems to understand whats its really like and just me to stop moaning and just get on with things, (they did so much more when they was my age) I just hope it doesnt get much too too quickly, my 4 year old already suffers as we cant go out much. xx

[Grangie]

Kassijade what meds are you on now. I had probs with methotrexate tablets but was offered self inject metaject pens. This was much better and nausea and gastric problems were eliminated. Worth asking for / trying if you had this yet.