Why oh why won't my legs behave themselves and walk, can anyone enlighten me ?

[petalnumber2]

Where has all the strength gone ?

I just do small food shops, a big supermarket trolley is a thing of the past for me, but as I get through my small shopping list my legs get weaker and weaker until I'm almost at a standstill. I've had problems with walking right from the start of my RA, painful toes, ankles and heels and Achilles tendons have been the worst areas of my body. As a result I have damaged feet and ankles, the right foot is more distorted and more painful than the left and it points inwards like being pigeon toed. Recently, my knees have been more painful and added to the problem.

I have an appointment with my consultant next Friday 28th and I'm thinking of asking him about physio, if that would help. I'm on 22.5 mgs Methotrexate plus 50 mgs Enbrel injection weekly and perhaps the Enbrel isn't working as it should ? I thought I'd bring this up with him too. But, I would so appreciate any thoughts and bits info anyone has to offer.

I think I've accepted this dam condition of ours quite well over the past 3 years and just made the best of life whatever. But, the chair with wheels is looming larger in the distance and I'm feeling terrified. June xx

[net2012]

Hi June.

You sound as though you are really suffering. I would have a good chat with your consultant about physio and also seeing a podiatrist for your feet. If you are still suffering flares it sounds as though a chat about medication would be good too. I went to occupational therapy and had some compression gloves made for me, made such a difference. Hope you have a good hospital that offers you all these services, as mine does. I have only had a two week flare in my feet once only and once was enough. Was so debilitating. So thoughts with you and good luck. Jeanette

[petalnumber2 in reply to net2012]

Thank you Jeanette, everything you say makes sense. I will ask about physio, but hadn't considered occupational therapy, so I'll look into that. June xx

[cathie]

I think physio might help. It's worth trying - or hydrotherapy if you local hospital offers it, non load bearing exercise. Very best, this is a horrible state to be in

[petalnumber2 in reply to cathie]

Hello Cathie, nice to hear from you, thank you for your thoughts. Hydrotherapy is something I thought about some time ago, but at that time it would have been difficult for me to go regularly because my time was really tied up looking after my husband Ian. But happily he is a lot better after having a partial amputation of his foot and so I think I could commit to a bit of hydrotherapy now. I hope you are in a good place at this time. xx

[cathie in reply to petalnumber2]

I'm in trouble cos my rheumy thinks I'm in remission. If this is remission... Anyway she has removed all my meds since the new year and made hurdles the last one of which is tomorrow in the shape of MRI scan. If that shows what you can see with the naked eye, ie. inflammation, then she might accept that I need treatment and I have a chance of going back on biologics. But at the moment I can barely walk. Have physio appointment on Monday and intend to exercise gradually. A very determined friend of mine once said if you don't use it you lose it. So I will keep thinking of him. Hope you can get some hydro, it's a good way to start exercise I think.

[knobblyknees]

I have the same problem except my ankles roll in and my toes face out like a penquin. The fact that your ankles are not straight is putting your knees under more pressure. My hospital have made me trainer boots which have built up soles and hold my ankles more securely. I've noticed my knees are much less stressed. Im also lucky enough that my supermarket have electric shopping tolleys which I always use. x

[denvajade in reply to knobblyknees]

Hi knobblyknees, I found it interesting about the feet - knee connection, my feet are bad and the right one really deformed and recently having problems with my knees, I have had RA diagnosed for 7 years. cheers

[petalnumber2 in reply to knobblyknees]

Thanks for sharing your own experience with me. That chair with wheels seems a bit further away in the distance to me after reading about the different things that might help my plight. What you have said about the stress on the knees through ankles not being straight makes sense to me so that at least I will have a better stab at explaining everything to the consultant next Friday. Thank you. xx

[sylvi]

There has been some very good advice given here and i can't add to that, but what i can add is some alternative help for you when you shop.

1, Why don't you ask for a wheelchair when you get to the supermarket and ask for a member of staff to wheel you round. I know exactly what your going to say and don't. Your pride has to be put to one side. If like me you like to see what your buying you will do it. Most supermarkets will supply a member of staff to take you round their store,especially if they want your custom,also if you don't get a good service when your in the position your in you will tell all the world and his wife and they don't need negative comments in this climate.

2, do your shopping online. I know you would sooner like to see what your buying and i agree with you,but at the moment you can't walk very far without pain and by doing it online no one will see you struggling. I know how you feel about this. It is an alternative and not a long term thing to do,but it will help you until you get your feet sorted out.

I hope these are of some help to you. Don't let your pride get in the way of going shopping. I have to use a scooter now and i hate the damn things and i would rather not use them,but i have had to put my pride away otherwise i wouldn't get out.

Love Sylvia.xxx

[petalnumber2 in reply to sylvi]

Hello Sylvia, it's nice to hear from you, I hope you are a lot better than you were a few months back.

It's so difficult to see the wood for the trees when going through a bad patch, but I read all the common sense solutions you offered and I immediately thought "silly old me, I'm getting myself all in a stew, why on earth didn't I think of that.

I've got a scooter which breaks down into 5 pieces and it lives in the boot of my little Polo, but my shoulders have been so troublesome for the last few months that I can't lift it out and put it together. The good news is that I've got a new bigger motorbility car on order which will have a hoist fitted in the boot to lift the complete scooter in and out in one piece, so that will solve a few problems in a couple of weeks.

My terror of a permanent wheelchair is based on the fact that hubby is more or less wheelchair bound and I just can't contemplate how we would manage. But, I should try to remember not to jump hurdles before reaching them, should I. Thank you for your wise words which have helped a lot, and take care of yourself Sylvia. June xx

[sylvi in reply to petalnumber2]

June i was in the same place as you and i was adamant i wasn't going to have a scooter. I hated the damn things and thought they were a nuisance. That was until five years ago when i had my knee replaced and i couldn't get about as well as i used to. Things got even worse when i had my ligaments were stitched back and if i went out i was stuck in a wheelchair. It was after that i had a scooter. It is a lifeline for me. i wouldn't be able to get out without them\( i now have two) I still hate them just not as much as i used to. When i go out with hubby we use a little one that goes in the car and i have a bigger one for nipping up the village without the car. I am glad i have been of help for you June. Love me.xxx

[Beachgirl]

I had the same problem podiatrist made me special insoles did a cast on both feet certainly helps with foot & knee pain, but I'm afraid it's the RA that won't let us walk far, some days are better than others, I get so frustrated at times I feel I'm walking on glass, and other days my legs just won't do what I wSnt them too,but we have to accept we can't do what we used to , hope you get the help you need

[petalnumber2 in reply to Beachgirl]

Thank you so much for your reply, you've hit the nail on the head for me. Like you, I've had trouble walking even short distances for a long time now and I've presumed that it's part and parcel of RA. I get really frustrated too, and I also find the dreadful tiredness maddening.

Last week I popped into a local supermarket to get just a couple of things while my husband waited in the car and my legs just went into total meltdown and I don't know how I managed out of there and back to the car, but I did thank heavens. It frightened me so much that I just cried on my husbands shoulder.

My husband is disabled and relies on his electric wheelchair and I am his carer, so the future feels a bit terrifying to me at times, but it's good to be able to blurt it out to on here to people like yourself who understand.

I need to have a chat with my Rheumy Doc next Friday about drugs and therapies, I think. But thank you so much for your understanding. I hope you have a good weekend as pain free as possible. June xx

[allanah]

Hydrotherapy really helped strengthen mine, I would recommend it xx

[petalnumber2]

Thank you allanah, I will certainly look into it xx