RA and Fibro ... double whammy and no life to live ...

[Susanne35Cat]

So, I made it through my older son Max's 11th birthday.

I was going to make him a cake (I used to do cake decorating) but my hands were just too painful.

I've been feeling down a little lately ... I am very much overweight from 8 years' high steroids. My body weight literally doubled. Of course it's causing my mobility to be even worse. My GP and Rheumatology Consultant look at me like I'm just too greedy or lazy to lose weight. The problem is that I can hardly move, walk or exercise because of RA pain and weakened muscles. I asked my GP for Obesity drugs, but apparently there is a national shortage. He referred me instead to the local Gym, which would be perfect if I could move.

I'm only 42, but feel like 82 ... surely I can't live like this forever??

This is no life to live ...

[Hidden]

Hi susanne, i'm so sorry your in so much pain and feeling down , yes i agree the steroids do put weight on you, i have put 2 stone on in two weeks and it makes you feel rubbish. Have you got to stay on the steroids or is it just while your in pain, because when you come off them the weight will drop. Maybe you could do some light exercises for RA that may improve the weakness in your muscles and not make them feel so stiff.

I had a flare a few weeks back and was in severe pain someone suggested to me to do light moving exercises for RA and even tho it hurt it did help with the stiffness now i do them all the time and my muscles dont feel as stiff and weak. It also helps blood flow. Also have you asked for painkillers or are you on any maybe ask if they can be changed as if you are on some they may not be working . i would definately go back to your gp or speak to your rhuemy and tell them how your felling and push the issue you want some advice other than the gymn which you cant do. Soaking in hot baths may help as well, i use radox muscle soak and stress relief soak . It does relax you and eases the joints . Try not to stress as this can make it worse too. Also have a chat to the online support on this site they are fantastic and always helpful as well as supportive. I hope i've helped in some way and that you get some relief soon. Soft hugs lena :)) xx

[Hidden]

You look beautiful in your pic , Ii have two stone of steroid weight to loose too!, how about swimming or aqua aerobics?, I SUSPECT that as steroids, putting on weight, that if you are like me comfort eating sneaks in too? especially if in a lot of pain and are down?.They recommend what is called range of movement exercises for RA.. Speak to NRAS and or a PHYSIO for some ideas? x

[cuddles64]

you are not alone, I know exactly how you feel and I have Type 2 diabetes as well as the RA. I have the polyarthritis version of it. You have my deepest sympathy. I hope you feel better so....or as can be hun. x

[allanah in reply to cuddles64]

Hi can u tell me about the poly arthritis version of diabetes. I am having loads of trouble with mine and the pills and a GP who only wants to give me metformin which makes me have chronic diarrhoea, message if you want , thanks xx

[minka]

hi sue

your not alone in this most people on here feel down somtimes with it all ive not been diagnosed yet at a year out after swimming where knees started then everything else

i dont know what the hell is going on with my body.

but when i get realy stressed it somtimes makes it a lot worse or frustrated cos i cant do what i want to do

especialy with my motorbikes lol

i see you live in that butiful area of kirby mallory ohhhhh how i would love to go and see my old pals at the festival of a 1000 bikes again

you take care and dont let the thing grind you down

ps my mate was on steroids and he put a lot of weight on initialy with them

xx

oh regard your comment for ever a little bit of hope is ive had this two time befor then it whent for 14 years didnt know what it was then came back then whent but left me with a bit of a problem then back again after 6 years and looks for good now

so you never know

[cathie]

So sorry to hear this. Ive had a similar problem with weight. Helped by diabetes meds to lose slowly. I dont find exercise easy but started with 1:1 tai chi which has really helped with flexibility. I hope you can get some support very soon.

[allanah]

Hiya, I SO know the feeling. I have had RA for two years now and have real problems with feet and Achilles and knees and hips so very difficult to walk.,therefore that and the steroids I have gained so much weight to. I tried diets that give me the runs, I stopped eating , that just made me feel bad, I tried tai chi etc but not aerobic enough to get me sweating, can't walk too far so limited exercise. When I spoke to the Rheumy he said what I really need was my RA under control!!!! Then I would be able to avoid steroids and do some walking. He said though maybe next month some aqua therapy and then to try and keep it up as I don't need to walk in the pool. I tried once before but couldn't get my cosie on or off easily so I am just gonna buy a bigger one!!

So I hope you start feeling better soon it's a horrible feeling to lose your confidence and your independence and I also know how it feels to have been slim and energetic and now a fat blob and exhausted. Just hope we can get our RA under control soon.

[oldtimer]

I find doing ANY movement is better than none. I sit in the chair and push my painful hands up towards the ceiling (and shouting if I'm in the house on my own as that makes me feel better OW! OW! OW!) And I lift my legs out in front and make them go up and down as well as lots of other movements little and often.

I do find it SO easy just to sit and feel miserable, or prowl into the kitchen looking for comfort food. If I feel like that I DO something to distract me and make myself feel better.

And I've just spoken to the rheumy nurse and she's suggested doubling my steroids for a few days and if that's not successful they will inject my wrists on Monday UGH.

I've managed to keep my weight at ONLY 2 stones above what I was before the steroids - but at least now I don't look so much the Michelin Man now I'm off the 30- 40mg levels.

I'm gradually accepting that I won't get back into those clothes but at least I won't be in a size 18 either. Steroids make me unable to judge when I've had enough food, so I've had to resort to measuring everything on the scales.

Keep going - you WILL get things under control! Every journey starts with the first step.

[sylvi]

I haven't read any of the answers yet as i wanted to speak to you without seeing what they said so before hand i will agree with what they have said.

I put four stone on in as many months as well. I had just weaned myself of them and now i am back on them again. Your feeling low is par for the corse with this disease,try not to let it worry and think tomorrow will be another day,thats how i think when i have a bad night,so the nights i don't sleep well i am not sitting there thinking why all the time. Think positive which i try to do,but just sometimes i let it slip. It is ok to have a rotten day.love sylvia.xxx

[Hidden]

Oh Sue I really can identify with the weight gain, the inability to do things that I used to do for the kids (can't brush my young girls hair in the morning and it really bugs me) You are right this is not the life that you should be leading, you need different drugs, an interested gp and a better consultant. It is really not fair.