struggling to come to terms with RA

Hi Carly

I sympathise with you so much! I am 36 and was diagnosed 3 years ago.  How long ago was you diagnosed?  Are you on any medications?  I am only taking cocodamol at the moment as me and my husband are waiting to go through IVF so I am unale to take any other meds.  Have you been offered a steroid injection? I too have days where i'm unable to get out of bed and feel so frustrated because my mind is wanting to do things that my body can't! The only thing that I can say is that the flare-up will pass.  My trouble is that when I get those times of being able to do some things, I really go for it such as cleaning the house from top to bottom!! I use Bio freeze, wheat bags and cold packs.  They don't get rid of the pain but help to ease it.  When you have the times of not being able to get out of bed then I think, you just have to accept that that is the flareup and have to wait for it to pass.  I too am still finding it hard to accept because we are so young and you made me laugh when you said you feel like a 99 year old because that is exactly how it is some days!!  I am realising that I have to slow down and just take things easier with this condition.  I can't imagine how you must feel having the children though, that must be difficult.  My daughter is 19 so she can help herself but I just feel useless when i'm unable to get out of bed.  Luckily at the moment I can but I am still in great pain.  I sometimes feel like i'm being a burden to everyone around me but others are supportive and I feel bad for taking out my frustrations on them.  Hope you get through your flare-up quickly but yes, I know what you mean, it's really hard to come to terms with but I do think times helps and just wait for those times where your flare up is not there :-)

Hello

Im so sorry u have this awful disease. Ive been in a flair since November. Im on medications and still waiting for them to work. I have two children and a partner who works long shifts.

I know the pain is bad and some days I cry. I even asked my consultant to chop off my limbs just to get some relief. But u need to push through the pain and fatigue. Staying in bed will make the depression worse. Even if u get up and get dressed, read a book in the garden u will feel better. Some days I just shuffle and can barely hold a cup but I do it cause im not gonnna let it control my life amd take over.

I do refuse help from my partner for some things and he gets frustrated at my stubborness but he knows thats im not giving in.

Please try to get past this glitch and enjoy life as much as u can. X x x

Hi Carly;  I feel that with RA, you are really going to have to be referred to a Rhuematologist (if not already seeing one)....and take the pain -relief/treatment that is offered ....you do need to stop the inflammatory process before it takes hold of you too much.  As others on this forum know so much from their experience, go back through the previous forum inputs, and research all of the latest/best treatments available....be armed with information for when you do go to see specialist....I am not being cruel, as we/I do really understand the Emotional Rollercoaster that you are on...it is very hard when we contract these debilitating conditions....I actually had some sessions with a Psychologist to help me work through my "coming to terms" that I was never going to be able to be the person I used to be.  I do not have RA, but Osteoarthites/Fibromyalgia and Chronic Fatigue....and I have accepted that my body is gradually deteriorating (at present my Facial Muscles have gone...which means pain when talking/eating....and once one part of my body goes, it is always there....very much like MS, but I won't die from these conditions)...and yes, I still have the teary days/frustration...but know they Really don't help.   I re-stress that you need to start your treatment as soon as possible, so you can get back some of your life, for your's and your family's sake.   I am sending this with my thoughts and feelings for you....it is hard....let me know when you need to vent some angst, as we are all here for you...this is the place to let out your feelings, and then you can smile for your family....Bron

Hi Carly

I completely sympathise also. I am 35 with 3 year children the youngest is 1. It is so frustrating when your in pain and need help. I have experienced some horrible days. Remember it's early days so you should hopefully start on some medicines soon to help make life livable. Hang in there! I am also recently diagnosed (2weeks ago) I have good days and bad but still have to wait a few weeks until I have my medicines given. I have had so far had 2 steroid injections which were short lived with regards to feeling better. I understand how hard it is to look after little ones with this illness but remember your husband is there for you and the children so don't feel bad at all. (I know it's easier said than done.) I have had family doing shifts to help me with my baby boy, even changing a nappy is challenging! Today is my first day in over a month where I am going to try looking after him alone! There is light at the end of the tunnel though you won't be left to suffer and I m sure you will soon receive the treatment you need! Keep us posted.

Michelle x

Hi Carly,

It's so tough right now I know, but like AnnaDevs said, the flare-ups will pass (take some hope from that).

Having 5 children doesn't make it easier and it sounds like your partner is helping you which is good to hear. Have you started treatment yet?

I understand about struggling to come to terms with it. When I was first diagnosed and in so much pain that I couldn't do the basics like doing up a button or pulling my bra straps up over my shoulder, I really didn't want to know anyone. I just wanted (and had to) stay in bed and not move in case it hurt. It's also really scary and it's natural to feel like that. I honestly thought RA hit the elderly, not people in their mid-thirties who have busy lifes to lead.

Have you been given a steroid injection? That might help ease some of the immediate pain until they can sort out a treatment plan for you.

I am treating mine at the moment through diet and cutting out dairy, tomatoes, citrus fruits and red meat. It does take a while to get into your system but I am already starting to feel better. I am taking anti-inflammatories and hoping to come off those at some point too.

These support groups are great and we do understand what you are going through.

Helen x

 

Hi carly

Just adding my concern for you as well. Everyone else has given you good advice. I am a fair bit older than you and I was diagnosed just over a year ago. medication has brought me out of a flair . Have you seen a consultant yet and got a treatment plan? Do hang on in there. 

Hi Carly, I know how difficult this is. I have been struggling through my children growing up too, been in bed so so much, far too much. Now my kids are 21 and 18 I  know they can at least look ater themselves. The only problem is they have grown up with me being ill and taken me for granted, as I always pushed myself as I brought them up alone. So now, even though things have become much worse, they seem to think I will sttillget up and get on with things. They just dont seem to realise the seriousness of this illness. My partner has been great, but we have only been together for less than two years and I am starting to see the frustration in him now.  Being moody is a big part of me too. I just cant help it! I get angry at the slightest thing and snap at everyone , then feel really guilty, but just cannot help it. I think it would be great to just get away from everybody for a while, give everyone a break, including myself, but how do you do that?!

try to have a soak in epsom salts or eucalyptus. That sometimes helps me. Force yourself out just for a break outdoors on relatively good days. It makes such a difference. Welive near the sea so I wll reallyforce myself to get dressed and get dow there, take a butty and drink and sit on a bench just looking out. It really helps my mood ad makes me appreciative of what I do have. I havent got out of bed yet today, but I will! I have taken all my pain relief, had my morning coffee so will take my time now and as soon as I feel able, will get dressed,even if I cant have a wash first!! I will put a dress on and get to the car and just enjoy being out for as long as I can. Evenif its only half an hour. It makes a huge difference to how I feel. Do you have a favourite spot where you feel at peace? Just try it as much as you can xx

Sorry to here ur not coping that well with RA I was diagnosed with RA just over a year ago I know how u feel but u will come to terms with it and learn to cope aswell are u on any meds yet or what are u taking just now I really do hope u feel better soon 😂