In agony - virtually unable to walk

Hallie2011

in space of 6 weeks I’ve gone from getting around pretty normally (be it with a limb) to being virtually housebound and using crutches to hobble to the toilet. Have also developed stiffness and swelling in thumb and wrists so using crutches is so painful. Can’t do any normal activity. My partner is having to dress me as I have no strength in my hands to do bra up and can barely bend to put on lower garments. Sleep is difficult and when I wake this past week have virtually siezed up so much so my partner has to help pull me up to a sitting position. I’m in so much pain my meds don’t feel like they are working. I’m due to have right hip replacement next week and have been diagnosed with moderate degeneration in left hip. Since Xmas feel my left hip as detiorated dramatically Can’t believe how quickly I’ve become immobile and in so much pain.. My knee and foot in right leg feels like it’s going to give way when I try to walk. I’ve got to stop taking my anti-inflammatory med 4 days before my op so worry how much more stiff I will get before I go in hospital. I worry how weak I’ve become that it will affect my post-op recovery or even that they’ll not do the surgery because I’m so weak. Any advise/tips or sharing of experience would be much appreciated.

Ellen

Good morning @Hallie2011

I see from your post that you are really really struggling with pain and stiffness and that you are about to have your right hip replaced next week. It sounds very much as though that can't come soon enough for you. Having said that facing major surgery is a very frightening time.

It also sounds as though your have a very supportive partner who is helping you so much at the time you need them most.

I don't think the hospital will refuse you your surgery due to increased weakness. The physiotherapist will be able to come up with ways to help you with your recovery post operation too such as maybe walking aids other than your standard crutches.

I wonder whether you have been prescribed any other pain relief in addition to your anti-inflammatories? This des feel a bit late in the day, but I am going to post this information about pain management in case there is anything you haven't yet tried:

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

In addition I am going to 'call' some of our members who have had hip surgery this year @RogerBill @Coddfish @Lilymary there are many more who I hope will perhaps pop by to share their own experience.

Here is @RogerBill 's thread with some tips:

https://community.versusarthritis.org/discussion/55224/hip-replacement-tips

I do hope you'll keep in touch and let us know how you get on.

My very best wishes

Ellen.

Hallie2011

Thanks Ellen it’s reassuring to hear you think surgery will still go ahead. I’m taking paracetamol and cocodamal in addition to naproxen. Each day I seem to have something else to contend with. This morning my thumb and wrist are really painful and swollen to the point I can’t hold my crutch (have had this for about a week but go considerably worse today). Goodness knows how I’m going to get on post-op.

frogmorton

Morning @Hallie2011

You do sound to be in a lot of trouble at the moment I am so so sorry to hear how much😕

I also doubt they won't do your surgery, but if you can manage at all are you doing any gentle exercise (even in bed?). There are some on here on this site for our hips which might help.

Also maybe the physio will get you some gutter crutches (where you lean on your forearm to rest those sore hands they can also supply gutter walking frames. They will see to it that they get you as mobile as possible post op they really will.

I've found some exercises which you could look at here

https://www.versusarthritis.org/news/2021/november/ways-to-help-manage-hip-pain/

Hopefully some of our other 'hippies' will be along soon to help you with their own experience.

Take care

Toni x

stickywicket

Believe me, you'll get on fine post-op. You're not used to dealing with this but they are. I have RA and OA virtually everywhere and always do well post-op. They start me on a gutter frame. (https://www.medicalsupplies.co.uk/drive-medical-domestic-medium-walking-frame-with-wheels-and-forearm-platforms.html?gclid=CjwKCAiAwc-dBhA7EiwAxPRylJ37fuzwccrELqp-c6yJLBS6ZoHrn6vJd4Nx2ycSxvqUdNTU2unj1hoCqn4QAvD_BwE) All your weight can go on forearms to begin with. I've had hips and knees replaced and no problems. Just do your pre and post op exercises conscientiously and don't try to rush recovery. I know you won't want to do exercises right now (believe me, I know!) but even if it's just gentle range of movement it'll help and will speed up your recovery.

An OT will advise about necessary aids and appliances. Maybe the extra work of Christmas and stressing about the op could account for your sudden downturn. I hope it all goes well.

Hallie2011

Thanks Toni really appreciate your advice. I’ve not been given any pre-op exercises and although doubt I can do any standing up will definitely look to see what I can do sitting down.

Jan x

Hallie2011

omg stickywicket your post has really made me feel more positive that things will be ok. Feeling as awful as I do now I’m struggling to see how I’ll ever improve. It’s so good to hear such an upbeat comment about your post-op experience. Also the use of a gutter game makes me realise there will be options. I wasn’t aware of of these. I’ve done nothing leading up to Xmas as my mobility has been so awful so haven’t had really had any stress to cope with as my partner has being fab doing everything , which is why I’m can’t understand how my condition and symptoms have spiralled in such a short timeframe. I just hope this next week until the op I can get through without much more deterioration. Trying to stay positive I know is important to aid my recovery but it’s so hard when today I’m struggling to even stand up.

Thanks again for such helpful advice.

Jan x

Lilymary

I'm sorry you're having such a tough time. My hip went packed up very suddenly - the pain came from nowhere after a fall so they xrayed me and found the damage was so bad I already needed a new hip. The pain from then on was horrendous till I had my new hip in 2021. I've had some uncommon post-op soft tissue problems since then, but that terrible pain in the hip joint, and all the referred pains down the rest of the leg, went pretty much straight away. Don't get me wrong, the recovery is painful for a few weeks, as they've cut out a bit chunk of bone and carved through some very major muscles, but they should give you pain meds to manage that, and soft cushions to sit on are a must, but the difference is you know it's going to get better, whereas pre-op you know it's only going to get worse. Sorry - I didn't mean to scare you with that description, but we've had a few people on here recently who were very anxious about their post op pain and hadn't realised this is normal for a while, but it's nothing like the pain levels you had pre-op.

Meanwhile, the rest of your body is working really hard to keep you mobile - the other leg is working twice as hard, your posture is out so muscles are being used differently, and your hands and wrists are taking an awful lot of the load so they're complaining too. I have nerve damage in my wrist and the crutches could get pretty painful, but I toughed it out as it was only short term while I needed them. And pain is really debilitating, as well as the hard work of simply getting around, and fatigue is a common result. It can also set off an inflammatory response and referred pains in other parts of your body. You'll almost certainly find that once the op is behind you and your body can start moving normally again, these issues will start to resolve. Some will improve instantly, others will take a bit longer as your body rebuilds itself. Despite my ongoing nagging soft tissue stuff, within 6 months I was walking up to 4-6 miles (couldn't even get round a supermarket pre-op) and have just taken up horse riding again (VERY carefully, but I'm up there!).

This is the tough bit. The operation and post-op recovery are a different type of tough, but it does get better fairly quickly, and what you're dealing with now will just be a horrible memory. Hang on in there, you're doing great given what your body's throwing at you!

Hallie2011

Thanks Lilymary for such a balanced account of pre and post- op pain. I’m going to hold onto the thought that it will be short lived compared to what I’m experiencing now. That’s want I’ve been telling myself these past few weeks but hearing someone who’s been there saying it making it believable. I think my worry still is that some of the pain and weakness in my knees and feet aren’t related to the hip and will remain after the op which if so is going to stop me getting my mobility back. My hip pain feels secondary now to the knees and feet. Today I’m struggling so much to put any weight on either leg. If only I knew all my symptoms were related to the hip. Next week can’t come quick enough 😘

Jan x

Lilymary

I did get a lot of referred pains in my leg generally, so that may be what you’re going through, but you’ll only know for sure after you’ve had your op. Hopefully they’ll go, but if not, the medics will know if there’s something else for them to work on next. At this stage pre op they couldn’t treat anything else anyway. Meanwhile, try keeping a diary of your symptoms, so you can see how things progress. Good luck next week!

Hallie2011

i’ve already started to keep a timeline of when things started and escalated. Thanks again for your good advice really appreciate it. Just got hold onto next week will begin to bring some relieve and answers x

frogmorton

Make sure you keep posting Jan ((())) xxx

Hallie2011

will do - thanks again for your advice and support xx

Hallie2011

Gutted my hip replacement surgery op has been cancelled due to high inflammatory markers in my blood. Now been told I need to see a doctor rheumatoid specialist to get a diagnosis and only when they are reduced can it go ahead. Don’t know I’m going to cope - can hardly hold my all my crutches as hands so painful. Without them can’t walk at all as can’t weight bear now on right side. To top it off the skin has rubbed off my elbows and are sore due to using them for leverage to help me sit up in bed. Just seems never ending at present 😩

stickywicket

This must be very disappointing and scary for you. You thought you were on the road to recovery but now something else. If it's of any comfort at all, I'm sure you're better off not having an operation while your inflammatory levels are high. They do need investigating. Meanwhile........

I can only try to think what I'd do.

1. Talk to your GP who may or may not have got the report. He/she is probably the person who needs to make the appointment with the rhèumatologist.

2. Keep talking. We have to do oir own admin these days. Ensure no- one has frgotten.

3. See about getting things to make your life easier. Ideally an Occupational Therapist would assesa you but, if that's going to take time and if you can afford it, check what's on disability sites. I'm thinking elbow guards, aids to help you get out of be The red Cross used to loan wheelchairs. See if they still do.

Your GP might be able to help with more pain relief. Steroids might be a possibility but it might be better to investigate the inflammation first as they can mask pŕoblems.

Most importantly, keep chasing that appointment with both the prthopaedic surgeon who advised it and your GP.

If desperate your local PALS might be able to do somethin.

Keep us in the loop.g