Hello everyone, I have recently been diagnosed with RA and read the articles on here with great interest. So far my GP has given me pain killers to handle this most painful disease? It's been a very long wait for my first consultation with a specialised RA Doctor, thankfully just days to go now (24 Aug).
There are so many treatments that I read about so I am obviously nervous but so excited at the same time, obviously I want immediate pain relief but the more I read that now seems unlikely
The day after my consultation I go on a Cornwall holiday with my girlfriend and my 12 year old son, that is really starting to worry me? My son talks to his friends about his "super dad" ex boxer, ex forces he comes out on the back of my 1200cc motorbike. RA is just so aggressive, I'm rarely on my bike because of the aches and pains. Sometimes I can hardly lift a cup of tea?
If I'm at my worst when we're on holiday I'll have a job getting out of bed, never mind getting on a zip wire or rowing a boat. In my mind I'm still fit and healthy, but my own body is telling me to slow down.
Will my first consultation help me with these thoughts? I know there is no miricle cure but is there something to help me get through this holiday without disappointing my son and girlfriend?
Any advice from this group would be very much appreciated.
Regards Les
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Les3867
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Just try to be positive although sometimes it will be rocky but you will come through this and learn to adjust . I've had this disease since 2014 and also have OA as we'll , but I've been fit all my life worked all my life done 6 years in the armed forces but through this disease I couldn't get out off bed the first month got retired medically from work last month which put me rock bottom ,but I've fought it and come out the other side I've started on a new treatment Benepali a biosomar and it's helping plus I'm on mtx 20 Mgs but I've been going too fitness classes for the last 2 to 3 months and I'm getting stronger every day , so you will get there all the best
Thank you so much for that. It's fantastic to hear that your feeling stronger everyday with the new treatment. Just hearing something like that, from someone who's gone through what I'm going through, gives me hope and I feel more positive about my upcoming RA consultation. Thanks again. Les
Tell the rheumatologist that you're off on holiday, and need to be active to look after your son. With luck you'll get a steroid shot and feel like superman for the next 6 weeks. I hate oral steroids as they turn me into Jekyll & Hyde, but depomedrone or kenalog by injection are truly marvellous. Many rheumies allow you to have 3 or 4 shots in the first year....I really don't know how I would have coped without!
If you're on anti-inflammatories then do stop taking them a week before your appointment so the rheumatologist sees you at your worst.
But it'll be fine, you'll be back on your bike soon.
Because my RA hit me badly and aggressively at the beginning, so my rheumy gave me 2 steroid injection, one on each side. I was still in great pain after that injections. Then I was given oral steroid daily, I was okay but the pain never subside. I still had to go through the very painful 1 year to come to a more stable stage. However, thereafter I was improving very steadily and today I am back to quite my normal self.
The only thing I hope to continue to see that my feet feel normal or nothing when I get out of bed in the early morning. Right now I still can feel a bit of stiffness but no pain at all, just feel a bit of different from my very normal self before the RA attacked.
May be I am a bit greedy, I am basically pain free now, only my can still feel not 100% like before but I believe I will be back to 100% normal one day. I am working towards that direction right now.
1, it will get better. I was like you too when it first kicked off and now,3 years later on the right treatment I'm almost back to normal......active and also getting stronger all the time with lots of exercise etc.
And 2, ask for a steroid jab. I had lots during the time we were trying to find something that worked. They might not be good for us long term, but they are a godsend short term. Worked like a miracle for me and helped me get back to work etc before things got controlled.
Good luck with your appointment and enjoy lovely Cornwall.
Thank you so much for that. I wasn't going to write on here but I'm so pleased that I did. Hearing from others with this condition really does give me that boost I needed.
You're welcome. We have all been where you are now and understand how scary it all seems. This site is great for support and as you say learning from people who are living with this condition.
RA does not mean you have a foot in the grave and its not aggressive for some just a bit inconvenient. There are some great treatments which work and work very well.Yes slow down but not to a snails pace. Its more like passing yourself really. I'm in remission it took a while but apart from the meds I take no one would know.
So stay positive, write down any questions and cheer up its not long now to the appointment and the NRAS is so worthwhile joining. The website explains a lot and its so easy to read. xx
Thank you so much for that. Sleepless nights with pain had put me on a downer but, thanks to the replies that I have had, I am feeling much more positive and looking forward to my appointment.
Sorry that you have had to join the club. Try and get the jabs, they will give you a respite. As for the rest, you are ex forces so look at it as your initial training: something you have to get through to get to where you want to be. You are strong enough. You know your son best, tell him what you think he is able to cope with. The RA Guy has a little sheet that explains everything in a fun way. I hope your appointment and holiday goes well.
If pain is still keeping you awake at night, maybe you could ask about the drug Amitriptyline at your appointment. It helps with pain but also has a sedative effect. It was an absolute godsend to me after I ended up at my wits end after at least two months of very little sleep because of the pain. My life literally changed overnight at the start of the year when I had my first major flare. I'm also at the start of the whole assessment process too so know how frustrating and scary this can all be! Hope your appointment goes well.
Thank you for that. I'll mention it when I see the Rhumey.
Thanks again, the support, like yours, on here is fantastic
I am a single mum with an 8 year old daughter and when I was in my 20s I played netball and taught trampolining.when life changes you need to change with it. It's hard to let go of the tough alpha male label as you may fear your son will feel differently but your his dad whatever you do and that will never change!. Sit down with him and explain how this effects you and while you don't need to be treated like a baby, you need to take things slower. unlike the other replies I wouldn't come off of your meds before hand. You need to let the meds settle into your system and stopping and starting them, for me anyway, always upsets the balance. Always keep as mobile as you can, stretch before you get out of bed and always be positive as you can be. Good luck x
I wish there was a magic wand Les but I am afraid there isn't. If you tell your doctor everything he may give you a steroid injection that will get you through your holiday. I hope all goes well and your beautiful Cornwall trip goes well.
As a mum of four who was also crazily active prior to RA I would say one of the best things you will ever teach your son is that it is not only ok but actively a great idea to listen to his body... I know this is not what you want to hear but we have a society that is still telling men they need to be big, strong and tough and that pain is for wimps etc.... I call BS! It is one of the reasons that it often takes men far longer to be diagnosed which means more damage has been done.
Take a risk. Dare to be vulnerable. Allow your son to learn that it is ok to say "this hurts and I need you'
It's a greater lesson than any zip wire...besides I'm sure your gf can do the zip wire with him... another great lesson... that women can do all that stuff too!
Big hugs. I hope the appt goes well and you find a consultant you can work with.
Be honest with them. Now is not the time to be a hero...a warrior, yes, but not a hero xxxx
Exercise is one of the very important part of getting back into your normal life. At the peak of my RA attacked, I could only start with a 2 1/2 feet long stick to move my hand. From reading your post, you are in a very much better stage than I was. No harm going through what kind of exercises that I had done during my recovery process.
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