Never too old to Rock - but can be in too much pain!!! - NRAS

NRAS

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Never too old to Rock - but can be in too much pain!!!

Metalhead666 profile image
β€’24 Replies

New to the site so Hi to everyone out there,

49 year old single male diagnosed with RA in early 2016, started with pain in both feet which then spread to both knees, both hands, both wrists, right hip and right shoulder. Shocked as to how life has changed from doing everything for myself to then not being able to do simple things like open a bottle top, put a plug into the wall socket and don't even mention trying to put socks on!!!

was put on 2 x Pranoxen and 8 x Co-codamol a day at first with no success, then 8 x Tramadol a day - again no effect, then steroids and now Methotrexane but no change as yet.

worst part (apart from the pain) is that my 6 year old daughter can't understand why I can't pick her up or play with her like I could 6 months ago and that really does hurt me!

Is there light at the end of the tunnel??

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Metalhead666
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24 Replies
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Moomin8 profile image
Moomin8

Keep in thereπŸ™‚

Metalhead666 profile image
Metalhead666β€’ in reply toMoomin8

will do, and thanks for the reply

woodstar1 profile image
woodstar1

Yes there is, give the meds time, let them find what works for you!! It is very worrying and shocking when this bloody thing hits but for most of us things really do get better. I'm a dad with 4 girls and I know exactly how you feel, just stick at it and as easy as this is to say, give it a bit of time. Hope you feel better soon pal, take care.

Metalhead666 profile image
Metalhead666β€’ in reply towoodstar1

cheers for the reply, appreciate the comments as I do to all who have been in touch, all the best to you and yours

cazzyme profile image
cazzyme

It is a spiteful disease but hang in there and hopefully things will improve with the Meds

Metalhead666 profile image
Metalhead666β€’ in reply tocazzyme

thanks for being in touch, appreciate the comments

Caspiana profile image
Caspiana

Hello. I know how it feels when your world suddenly changes so drastically. I remember not being able to open bottles, pick up a frying pan or carry the shopping. It all seems overwhelming at first. But don't panic. Things do get better. Once you get the right treatment for you, and that can take some time , things will start looking up.

As for your little girl explain that you can't pick her up right now but once you're better she will have lots of picking up. In the mean time she can have lots of sitting down cuddles. 😊🌼

Be kind to yourself. Get lots of rest and let your body take it at it's own pace. Take care and welcome to this great forum. 😊🌻🌺

Cas xx

Metalhead666 profile image
Metalhead666β€’ in reply toCaspiana

Hi Cas, really appreciate your reply

your right, this is a great forum, everyone is so helpful and supportive

dtech profile image
dtech

Welcome to the site. Yes I know it's difficult but, as others said, hang in there, it does take a while for the meds to get the right balance and start to work. Oh and lay off the head banging for a while and playing air guitar to def lepperd discs until it does! πŸ˜‰

Metalhead666 profile image
Metalhead666β€’ in reply todtech

Def Leppard !! - too soft for my liking, and playing air guitar is easier than playing my actual guitar, cheers for the reply

Crusee profile image
Crusee

Hi hello and welcome.

You may not think so now, but things do get better.This could take some time with getting the right combination of meds and doses right to suit you.If you read other posts on here you will see it often takes some time, as different folks react differently to certain meds.What suits some doesn't suit others.

This disease is often difficult for adults to understand let alone a 6 yr old child.My. Granddaughters 11,8&5 know that Nana can't play games in the garden, but there are other ways to make up for it.Just explain you can't pick her up at the moment but you can still hug her when you are sat down and get involved in more sedate activities.

I used to cycle 80-100 miles per wk a few years ago and now I can no longer walk as far as the shed to see my cycle ( yes I still have it thinking one day I will get back on it--??) so I can understand how you feel your life has changed so much and yes it is difficult to accept especially if you have been an active person.

Just do what you can with her that you feel up to doing-any time you spend together is quality time .I Know 6 yr olds are a bit full on most of the time but she will appreciate anything you can do with her and any time you can slend together.I know it's been said before but children are very resilient and we don't always give them credit for what they are capable of.Be honest with her and explain in your words what's happening to you.You may be surprised at what she understands.

Give your meds a chance to "kick in" and hopefully you can be a full on dad again very soon.

Take care.

Crusee

XX

Metalhead666 profile image
Metalhead666β€’ in reply toCrusee

thanks for the kind words, kids are resilliant and thankfully someone invented play centre's so we get to spend time "playing" together

Crusee profile image
Cruseeβ€’ in reply toMetalhead666

No problem.

Take care,enjoy your time together and things will improve.

If you have problems,or just want to let off steam, come back to the site there are people here to listen and offer a helping hand.

Crusee

XX

It's hard to understand this terrible condition I am sure you will get the support you need it just takes time it's been 3yrs for me and still trying new medication some can get sorted straight away and take back control of there life every one is different

Metalhead666 profile image
Metalhead666β€’ in reply to

yeah my Doctor is good and my rheumatologist is patient with me when I drag myself in to see her. Good luck

smithfield profile image
smithfield

Hi Metelhead, Sorry you are here, but welcome.

The RA can hit quickly and painfully unfortunately getting the right combination of meds is a slower process and while it is frustrating slow when you want to get on with your life there is light at the end of the tunnel. It just needs patience ( I find that difficult) or a good rant on here helps.

I really do emphasis that you can no longer do the physical play with your daughter, while not exactly the same, I have grandchildren one in particular I am especially close to she lives near by and stays with us a lot. Kids are so adaptable and flexible she knows i cannot bend or even walk quickly or very far, but as Crusee says there are other ways to interact. I have become a whizz at helping her with her homework, we read a lot together, she sits next to me for a cuddle and probably most importantly because I am not always bombing around doing things I have time to listen to her.We still do outside activities visiting places, or just going to the park. She knows I will be a passive observer but again most importantly she knows I am there.

Best Wishes

Smithfield.

Metalhead666 profile image
Metalhead666β€’ in reply tosmithfield

a rant is exactly what I have needed to do for the last 6 month, so glad I found this site.

amazing how people here are so understanding, THANKS

stbernhard profile image
stbernhard

Hello Metalhead, I went through exactly the same in 2009( as did many many others). I found it hard to cope with the pain and inability to do even the simplest things. Then came the dreaded fatigue. In 2010 things started to improve and within that year I started to take control of my life back. Soon I started to do all the things I could previously do. A little at a time, but regularly and tenaciously. Now I am in clinical remission and flare ups are very rare. Hang on in there, medications improve all the time as does awareness and training within the medical profession. (what's your favourite rock band?) All the very best and keep us up to date.

Metalhead666 profile image
Metalhead666β€’ in reply tostbernhard

fave band is Manowar (kings of metal \m/ \m/)

I had a lot of fatigue before I was diagnosed with RA and looking back now I should have realised something was wrong back then, even now I am totally wrecked and sleep very little - lucky to get at most 2 hours of real sleep a night, it's like I am simply too tired to sleep or the pain won't let me sleep.

good to hear you are getting on with your life again

dtech profile image
dtech

When I first got RA I was suffering from the fatigue and then not being able to sleep. What a daft contradiction that is!! My GP gave me sleeping tablets (zoplicone) which I took when necessary. So at least I was able to get some sleep and recharge the batteries.

linda-5502 profile image
linda-5502

Sorry am a.bit late in replying you gave my sympathy. I am 70 so have a lot of good years like all say.it will.get better but it us the finding which Medstead are right for you. Good.luck give your daughter lots of hugs and xxxxxxx instead for now.

I.do go.swimming 2-3 times a week and I have a gym routine I can do.in the water send that helps do much but then I get tired so rest for an hour then am Okeen

Thing of you and your family take xame

Metalhead666 profile image
Metalhead666β€’ in reply tolinda-5502

thanks for your kind words.

exercising in the water is a great idea so thanks for that, my feet are really painful 24/7 so doing something in water to take pressure of my feet will be a blessing - even if it's only for a hour or two

and yes, my little munchkin gets lots of hugs and kisses,

take care

Sheila_G profile image
Sheila_G

Hi. Yes there is light at the end of the tunnel. Don't be put off by worst case scenarios. It is early days for you and you will settle down to the right meds and dosage. Look forward to playing with your daughter again. Stay positive. All the best.

Metalhead666 profile image
Metalhead666

got to stay positive - the way I look at it is if I've got RA then someone else hasn't so, as daft as it sounds, it makes me feel good for them

thanks

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