Physiotherapy: I have sle lupus and suffer with... - LUPUS UK

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ramada profile image
7 Replies

I have sle lupus and suffer with sever back nerve pain and numbness with my both knees.I have mobility issues and most days I can't even stand up and walk is difficult

I had my first physiotherapy appointment.The physiotherapist did a assessed and refereed me for further physio. They didn't do any scans or xray and said how my symptoms are related to lupus and that I only need physio exercise.

I was hoping my physio would do xrays or MRI scans? Was also hoping them to prescribe me a walking aid? Now my question is do the physio prescribe walking aids at the first appointment ?

Thanks in advance

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ramada
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jayfer profile image
jayfer

Hi, I asked about a walking aid, and was assessed, shown how to use and given 1 straight away. It was a walking stick with handle curved but can't use for any length of time as my hands seize up holding it. Hope the physio helps

misty14 profile image
misty14

Hello again Ramada

Sorry to read of your mobility problems that sound similar to mine. A few years ago when I was given my walking stick by a Physio I had asked her if it would help my problems . Maybe you could do the same?. I have a similar assessment Pain Physio appt on Sept 1 St so am interested in how you get on!. Hope your better soon. X

Barnclown profile image
Barnclown

In my experience, physiotherapists have relied on consultants to have organised any necessary imaging, examination & lab work, so that I was only referred to physiotherapy once my consultants had figured out a reasonably convincing diagnosis for whatever problem physiotherapy was going to help treat. I've had a lot of physio over the decades for various issues, and this has always been the pattern: referral to physiotherapy once diagnosis was reached. So I'm wondering, have you thought about asking your consultants about imaging (MRIs, CTs, X-rays) helping physiotherapy to help you?

Wishing you all the best

ramada profile image
ramada in reply to Barnclown

Hi barnclown,

Thanks for your reassurance.

I was diagnosed last November and a week later I found out I was expecting so my rheumatologist didn't do much xrays or scan because of the pregnancy but now that my baby is month old iv been beggy my rheumatologist for a MRI scan but he kept saying how there's no need.I even requested my gp and got the same response.

After I had my first physio assessment I was really upset with the way they had dealt with me so I decided to ask for my physio to call me back and this is what she has to say "lol"that I'm young and she didn't think it will suit me having a walking aid with a new born bby and that I haven't had a fall or injured in the past.my reply to her was that I had waited good 6months for this physio appointment and only I know how much I'm struggling with my mobility.I want to be able to support myself so that I can look after myself and my children. I struggle to balance myself and find walking difficult and use my baby's buggy as a walking aid.

Ahh I just feel alot of times we have to fight for our right which is really upsetting.

Barnclown profile image
Barnclown in reply to ramada

Littleeffie' reply is a v important heads up. To me her reply is the voice of experience. I couldn't say it better than littleeffie...especially cause I've not been lucky enough to be able to bear children, so I can only begin to imagine what you're up against. All I know is that you're right to pursue diagnosis , even if it's only partial, before undertaking treatment (eg by a physio). I did myself real damage back in my 20s by doing things the other way round....now, I start by appealing to my GP and stressing that the problems the NHS will have if it continues to ignore my pain & mobility probs are bound to be much greater if it continues to deny you fuller diagnosis of these probs. your GP can refer you to an orthopaedic dept which can then conduct imaging tests etc, and these can help force rheumatology to take you more seriously, and also help you get referral to a Pain Clinic, physiotherapy & Occupational therapy.

Hope you'll let us know how you get on

littleeffie profile image
littleeffie

Hi Ramada,

Many years ago I was told by physio at first appt that I should use two sticks which soon became elbow crutches , alwasys better to use two to avoid spinal,hip twist. A couple of years later I was given knee braces and then wrist braces.OK I got called RoboCop,tombraider and skateboarder ha! I wish I had just had the braces as sticks and cruthes are great to start with but nobody warned me of the tissue,ligament and joint damage they can cause after years of use.You ,as I was,are still youngish and I wouldn't want you to suffer later down the line as I am so ask if knee braces might help and if they offer you sticks ask for elbow crutches as more supportive and less wrist strain and use only when absolutely necessary.Also use for short periods as the strain on neck and shoulders which then take the weight instead of legs can give you bad migraines, well it did with me.

It is difficult to deal with a baby/children with Lupus tagging along but as you and they are ultimately more important than anyone or anything else make sure you ask for and get help.Phoning the consultant s secretary or physio with a screaming baby is difficult but will normally get your message through.Good luck and make sure you enjoy being a mum!

Take care of you and you will be bettet placed to take care of your little one

Effie

ramada profile image
ramada

Littleeffie thanks for your reassurance.. Lol I might actually call my rheumatologist then they will realise how I'm an struggling with new bby

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