[jellyjazz]

Does anyone else have arthritis that came as a package deal with the lupus?!

I'm currently undergoing physio to help my arthritis but i was wandering at what point do you consider mobility aids?

I can walk around town for about 15 mins before my knees give up on me - my Dr. mentioned crutches but i panicked and said no straight away And because of that i never really heard about the benefits of using them?

I'm guessing that they take some of the weight off your knees?

Can anyone help me out please? I'm not sure if its somethign i should bring up with my physio.

I just want to be more mobile for a longer period of time and not in so much pain!
Thank you!

 

[Joandublin]

Hi Jelly

Arthritis is very common with Lupus. Of course there are different types of arthritis but whatever the type - the pain, discomfort and lack of mobility can pretty much be the same.

I think you should definitely consider mobility aids if you are finding you can only manage about 15 minutes and you want to be able to be mobile for longer. I have a cane which I have to use sometimes and it does help get me that extra bit of journey. The cane helps with two things.

Firstly my hip gives out now and again and when its playing up I can use the cane for security which means I wont fall flat on my face if my hip decides to 'go'. Secondly I use it when my knees and ankles are bad because I can transfer some of my weight onto the cane. I wouldnt be able to do an olympic sprint with it, mind you, but it helps :hehe:

There are all sorts of mobility aids out there and having a chat with an occupational therapist can be very worthwhile. You might be able to get a referral to one through your physio?

I found it very awkward at first using the cane. I was a bit embarrassed about it but I learned to get over it. They are a bit of a nuisance because everytime I went into a shop and wanted to look at something I would put the cane down and it inevitably clattered onto the floor! After one funny scene where the cane was slipping and I was frantically (and fruitlessly) grabbing and grabbing at it to try stop it from falling, it eventually clattered to the floor and the shop assistant smiled and said - well at least it cant fall any further :lol:

The great thing is I dont need to use it all the time but when I do I know I can whip it out and I dont feel awkward about it anymore

Luv n stuff
Joan:rose:

 

[Roseanne]

Hello!

I have had problems with my knees, hips and ankles for a long time, and frequently need help walking. Sometimes I do need support to keep the weight off the painful joints, at others times just in case the joints suddenly give out on me.

I went to an occupational therapist very shortly after my diagnosis, and she was a real blessing. I went with a list of all the things I had difficulty doing, and she talked me through each one, defined the problem excatly and made some really helpful suggestions. I was in a really bad way, so have supplemented my life since with an electric toothbrush, wide handled cutlery, a kneeling chair, wrist supports and crutches.

The cruthes were difficult to use, and so I got the idea of using a walking cane instead. It has a strap and a comfortable grip at the top so that I can hold it gently and hang it from things when I am sitting down. It also has shock protection which makes using it hurt less. It also looks a bit better than a crutch...and I get less questions and more smiles...and the occasional House MD quote...

I really hope you can find something that suits you...good luck!

R

 

[LolaLola]

Dear Jelly Jazz,
I use crutches. As well as helping hips and knees and general steadiness they seem to help my lower back. They also have a bit of an advantage in that people don't squash you up so much in crowds.

If you do not have a good NHS Physio it is worth a private physio appt. to make sure the crutches are the right height for you and to have a quick lesson on using them. Getting ones with moulded handgrips are a good idea as they are easier on your hands.

I tend to use them more away from home,on longer journeys. Like you I hate people seeing me on them but they are necessary.
x Lola

 

[KarolH]

Hi Jelly,

I do not have arthritis yet I feel like I do. My joints hurt me terribly everyday, especially with the rain and very cold weather. The last 6 days here it has rained and today I am nearly crippled.

I am sorry your dealing with this. It is painful and can be debilitating.

I sure hope you get to feeling better soon.:wink2::wink2::wink2:

 

[wheeliefab]

Hello I'd certainly ask the physio if I were you and don't feel bad about needing whatever aids help you.

I'm only 43 so at first I felt a bit "funny" about using a stick as I can actually walk, stand, move around etc, and I didn't like to think of myself as "disabled".
However the more I've accepted that Lupus is actually a disability and learnt to use what aid I need the better I've been. (I now use a walking stick, shopping trolleys, wrist supports, ask for help more etc) and I've had less flare ups, less fatigue and overall my arthritic symptoms have been better

I don't always use mobility aids as it can be a "hassle" carrying a stick around with you when your shopping etc (a wrist strap can help with the problem of falling sticks, but you still end up with one less hand for bags etc). However there are times I would not be without my walking stick as it can make a big difference.
for example I can walk for further without having to stop when I use my walking stick (some days I'd be too arthritic to get around without it)
using a stick helps me ache less when I'm standing,
it seems to help me not get as much hip & knee pain in the first place/ suffer on the days after a trip to the shops etc,
it serves as an extra aid in getting in & out of chairs etc - particularly useful for my morning stiffness,
and there are times I think it has helped other people accept that actually I do really need that seat on the bus etc and I'm not just a "lazy young woman" (as one OAP actually called me for sitting in a disabled priority seat one day)
Also I now have a Lupus UK sticker on my walking stick so I'm helping spread the word.
Don't be afraid to accept your Lupus and any help you can get that makes your symptoms more bearable

 

[lazylegs]

Hi Jelly,

Mobility aids really make a difference. I have a set of crutches that go on the arms, I find them much more stable than the regular kind. I also have a cane, but need more than that now. My favorite is my rolling walker with a seat. It really helps with my balance and posture. The added bonus is having a seat when I get tired or I am waiting in a line.

Take care,
Lazylegs

 

[Raglet]

I mostly use a walker, but I use crutches in environments that make using the walker impossible/difficult (walkers are only much good inside or on concrete paths). I prefer the walker due to my specific problem (no proprioception) but the crutches are very necessary if I want to do something like go for a swim or walk in the bush etc.

Crutches are great provided you don't have significant hand/arm involvement. My father who had severe arthritis was unable to use crutches as he couldn't manipulate them with his arms, so it is very individual.

The best thing to do is go to a shop that stocks a range of disability aids and have a play and see what works better for you.

By the way, someone said that canes absorb shock better than crutches - generally that is about the type of rubber stopper that is on the bottom on the crutch/cane. I always get the stoppers on my crutches changed to the sort that absorb shock better. I find canes are much too wobbly for my balance, but they may work for you.



raglet

 

[Douglas]

I have used a cane on and off since 1973. I have a nice wee collection, including a sword cane and one with a French ivory head and my name engraved on a ring. Another one has a built in compass. Most days I need to use the cane for at least part of the day and especially if shopping.
Crutches were ordered once a very long time ago because of my "bad" knee.
The official Dx is "SLE and osteo arthritis"; at least that is what it says on my license to have a handicapped sign to hang on the mirror of the car.
I have been known to occasionally look with envy on the walkers with a folding seat and hand brakes.
The moral is I think I look distinguished with a walking stick!:wink2:
Maybe you can just try and find what helps.
Douglas+

 

[lin]

I think what ever makes life easier for you, as joan said you need to see the OT, i know at first you may feel a bit weird using these things but wht ver hepls i say,

i have come home this time with even more equipment, but you know if it helps then so be it, i have a Commode to under stairs, but no one else as to know about it, cant do nothing about the things that are on show,

but like i say if these things make your life a little easier then get them
thinking of you Lin xxxxxxxxxxxx

 

[jellyjazz]

Thank you for such a great response.

I have already seen the OT and have had splints (millions of them!) given to me and i have some moulded ones too - im due to go back to get my other wrist moulded so maybe i should bring it up then?

I'm off to see the physio today - the first of a 6 week course. So is the crutches issue a physio thing or an OT thing?

Also i would feel a little strange using a cane...and i know i probably shouldn't but i'm only 21. My OT has always been great in making sure my splints look nice/funky (mostly to make sure i wear them!).

A friend of mine who has arthritis (but not lupus) had a lot of trouble with her OT allowing her to use mobility aids - they wouldn't prescribe them for her so she had to go without until she bought an aid independantly - but who knows best? Did they turn her down thinking it woudl make her legs worse?

xxx

 

[tutublue]

Sorry to hear your joints sre giving you trouble.

I have had arthritis and back problems since the age of 17. I have been on crutches, sticks and in a wheelchair in my time. I was 1st given crutches by OT in my early twenties which to me was too young to be seen needing them, so I never used them. But hobbling along without them led me to slipping a disc in my back which caused so much pain that I would say use them if they are reccommended to you by your physio.

I now use a 1 or 2 sticks depending on how much support I need on the day. My physio gave me the type that are moulded to the shape of your palms which I find is a lot more comfortable than the standard kind as they reduce soreness on hands and wrists.

I hope you find the mobility aid that is right for you.

 

[wheeliefab]

funky canes

This may be usefull for funky canes etc http://www.brokenbeauties.com/comfort-mobility/mobility-canes.php

I've not yet ordered anything from this site but it gets the green light on my security software and I personally like the butterfly one as if i had one I'm sure people would comment "thats fancy" and I could use it as a cue to mention Lupus and butterflys being our symbol - I'm leaving hints with my sister for Xmas