How do you deal with loss of mobility ?

[garlictwist]

I am 43. This time last year I was winning fell races, cycling across Europe and walking everywhere.

This year I can barely stand. I have developed severe arthritis in my feet and damaged my hips.

I am desperately throwing money at the situation, seeing podiatrists and physios but essentially have been told there's not a lot to be done and even surgery won't be the answer.

I am really struggling mentally. I have lost so much. I can't bear to see my friends and husband enjoying the life I used to and have deleted all my social media.

I cry every weekend because I feel so alone (no kids and just don't know what to do with my time). Not to mention the constant pain which is so draining.

I am trying to be positive. I really am. I am making a real effort to socialise and do new things. And trying to put my all into my job which was admittedly neglected before due to my hobbies. But it's so hard.

I really sympathise, op. I'm going to follow your thread as I'm going through something similar.

So sorry OP no wonder you are struggling mentally. I don't mean to sound trite but could you look into some new hobbies that are more sedentary? I hope you manage to fine a treatment that alleviates the pain.

I became suddenly disabled due to a neurological disorder.

I used to be a runner, very active etc so it hit me very hard. Especially the impact it had on my family.

I had some therapy to get my head around it all. This was as part of some neuro rehabilitation I was offered. It helped immensely.

Finding joy in different things has been hit and miss. I still miss running so much. I sometimes dream I'm running through the streets and I realise I'm not in pain or using my walking frame/sticks. And I wake up and it hits me like grief. Essentially it is that, it's grieving my old life.

In a word, terribly.

I developed arthritis at 26, my body stopped working but my mind took about 3 years to catch up.

I refused to use a walking stick until I was falling down in the street.

Take all the help you can, physio, meds, therapy.

Life does go on. Life is different. But it is life.

I'm really sorry to hear that. My DH developed chronic pain and it's been a huge adjustment for us.

1. Are you getting good enough treatment? There are disease modifying drugs available now for some forms of arthritis. You do have to go through older and cheaper drugs before accessing newer and more expensive ones though. But make sure you're not being fobbed off.

1. Pain clinic holistic review

If your pain is chronic you should be able to access specialist group counselling via the pain clinic in your area, which can be helpful to meet others and get support. DH had great success with a modified version of DBT that helped him to hold the two conflicting ideas that it isn't ok to be in pain with the other idea that he can still have a meaningful, great life. Grief is very much a part of the process.

1. Modified versions of hobbies

Is it possible to modify anything you used to do? We bought an e-bike for example, which DH sets to turbo so he can join us.

1. Pacing, spoons

You might have heard of pacing and spoon theory which is about managing the distress that pain can cause and the tiredness that can happen because it takes a bit more energy to regulate everything. It's important to try not to push through but create a mindful balance.

Sending you

I have found it really hard. I have very bad Rheumatoid Arthritis that's not under control and have been trying many different drugs, about to be started on a new one.

I have done martial arts for many years and have pushed on with it, with the RA. I haven't been able to train for a few months now and it really upsets me.

Every week I think I'll give it a try this week and just can't do it. I've gone from being able to do very high, jumping and spinning kicks, to going up the stairs on my hands and knees and down on my backside.

The way I try to look at it is, there are people worse off than me and I have a lot of support at home.

It's tough though.

I’m in a similar position. Have gotten into several wheelchair and walking sports. Also, lead / rope climbing helps immensely.

In terms of exercise try getting into swimming. My Mum who had RA and other serious illnesses from her 40s loved it.

It's bloody hard. I have rheumatoid arthritis, and hope you are getting the right treatment. Methotrexate worked so well for me initially - when I was late 30s (not so great now),

I sometimes feel jealous of people who can walk normally without pain when I'm having a bad day with my knees. Illogical - but there it is.

I've taken up crochet, reading (more), cross stitch, etc. I also try and build upper body strength as it's mainly my knees that are affected, although some days = it's all over.

@HelpMeGetThrough I also try to think that there is always someone worse off and at least I can walk (after a fashion - ie sometimes with a bad limp and lots of pain ). The last rheumatoid appt I had, I asked to trial a biologic drug for a few months and was met with a point blank no. I'm on 20mgs Methotrexate injection once a week which has stopped working as well. I felt like they'd put me on the scrap heap because I'm 59 and I've had RA since I was 33.

@littleblackcat27 I inject 20mg of mtx a week and also take hydroxychloroquine and the biologic Baricitinib. That isn't working, so I'm about to start Rituximab infusions in October, two a fortnight apart and then every 4 months. Gives me a day in hospital doing nothing.

Hopefully I can stop or reduce the daily codeine and morphine, although they can be fun at times 😁

I had Covid last September and have been left with fibromyalgia and arthritis. I have gone from being able to walk miles and hurtle about the ward where I work to being in agony 24 hours a day. I am about to change jobs to one where I am sitting down and no longer patient facing.

It has been so difficult to come to terms with and having to use a crutch when I go out, and in January my mental health was through the floor, but I won't say I have come to terms with it, as that would not be true but I am coping and at the moment that is as good as it gets.

Oh gosh @HelpMeGetThrough that sounds awful for you - many fingers crossed that your Rituximab infusions help. I take diclofenac and paracetemol for pain, but only when it gets 'bad' for me if that makes sense.

@whydoesitalwayshappentome I'm a nurse as well, as it is a physical job all right, fortunately the area I work in is not constantly on your feet for the whole shift. The Sister on our unit got arthritis very badly after a flu jab last year, but after 6 months of a new treatment for arthritis inflammation, she's fine now! (on no treatment_ ) I'm not jealous at all (MUCH) - hopefully you may find the right treatment that clicks for you - x

@littleblackcat27 If only the Dr's were interested in helping me. I was told I have fibromyalgia and just have to put up with it. (Fabulous) I am on Amitriptyline which helps me sleep but they won't prescribe anything else. x

I haven’t been able to walk since a severe reaction to my last Covid vaccine last year.

Its very hard. Very hard. I’m so jealous of people who can run and walk. It’s taken for granted by them, that their body will move. I’d love to feel like that again.

Not very well.

Ten years ago my health started to deteriorate though I was still mobile. Cost me many friendships, people couldn't understand, I didn't have the energy to keep explaining, many of them thought I was depressed because the condition I have is wildly misunderstood.
Three years ago, I lost my mobility as I knew it, pretty much overnight. I was in agonising pain at first, was a very dark time. I did the same as you, deleted social media, pushed anyone remaining out of my life with the long term plan of ending it all.

Walking used to be my therapy, it was snatched away. I'd already had to give up so much so losing my mobility was the icing on the cake. I've got the pain under some control and adapted my life accordingly, pretty much don't have one. Some days are better than others. I find it amazing when I see elderly people walking around with ease. I'd do anything to be able to go on a hike or run which is ironic because I didn't care for those things when I was well!

I'm not the poster child of mobility loss positivity but I'm still here, still trying, gratitude comes easily some days, not so easily on others. I cling to good days/hours for dear life. Hang on in there OP.

Thanks all. Weirdly it helps to know I'm not alone.

I also marvel at people walking around without a care in the world even though I used to be one of them.

My other half tells me to be grateful for what I have - a house, a bed, food and yeah, fine. But he says all that whilst swanning off on his bike or out to the gym.

I wake up each morning and I've often forgotten. And then I get this jolt of remembering and I just feel like "what's the point".

I work with a lady who is a wheelchair user and has no mobility at all and I try to feel grateful for what I can do and admire her so much for her seeming good spirits.

But I just miss my old life so much and wish I hadn't taken it for granted.

You are very young to lose mobility through arthritis. It's hard enough for me in my 60s. Frustrating and painful.
What kind of arthritis is it? Is there any treatment / physio?

I have both rheumatoid and osteoarthritis. The RA is much more serious but ironically it's the OA that causes more pain. That's because RA is treatable and once the right drug combination is found it's possible to be symptom free.
OA is just degenerative and pain killers / joint replacement seem to be the only solution.
Movement is still vital though. Find a different exercise that you can do and enjoy even if it's not fell running.

I just want to thank you for your post as I'm going through similar. I'm not coping, im miserable and frustrated. It does help knowing I'm not the only one although I wouldn't wish this on anyone.

No matter how many hobbies I have, like reading, writing, instrument etc, I have so much pent up frustration and energy that I desperately need to have the release of physical activity like a run or brisk walk. But I can't. And that leads to anger and a feeling that I'm going to explode.

The operations I was going to have to help me can't be done now as I have stage 4 cancer ontop of all my original problems and it's spread to my joints and bones.

What's the answer? I really don't know .I don't want to spend my remaining time here being miserable so I keep trying, I use a gratitude journal and try and help others who are struggling but honestly I often think what's the fucking point.

I'm having therapy, I'd be much much worse without it, but I just feel stuck and long to just to go for a walk.

I sincerely hope you find a way, me too.

It's arthritis for me too, after an active life. I simply decided that I couldn't have back what I had but I'd already done more than most people ever do. I was lucky in always having been a "seize the day" type of person. And I still do, but now my days are different. But I don't let it stop me - I'm currently in Greece and having a great time. You can give up. Or not. Your goals may not look like they used to, but that didn't mean you shouldn't have any.

I have systemic sclerosis and several other conditions that cause chronic pain. In the last year pain has increased by a huge amount and my mobility dropped with it. I had to give up work last year due to illness and its a huge wrench, Ive worked since I was 14 and im only 50.

I managed to access some specialised medical counselling through a local charity and I cannot express how helpful it has been in my coming to terms with things. People forget how badly MH is effected by pain and loss of mobility and I found my therapy team understood this better than any other medical staff i have ever come across.

If you can go private, thats great, or have a look around local disability charities to see what help is available. Scope website is brilliant too.

Unmumsnetty hugs to us all. Its bloody crap.

I struggle with pent up energy too. I feel so unfit.

Somedays l just want to feel the air on my face. But I’m reliant on other people.

I can’t run any more and have to be careful about jumping/lifting.
I have got into outdoor swimming - lakes and rivers.
The cold gives you an adrenaline lift and is also good for pain. It’s a very supportive community and you’re outside, which is what I need.

I'm not coping well. I'm 60 and for the past two years have been battling osteoarthritis, mostly in my right knee and a little in my left knee and left foot. Told by go to take paracetamol and ibuprofen, which has no effect. MSK unit gave me exercises to do, which haven't helped so far. The past two weeks the pain has developed in my hips too and I'm so miserable. I want to be able to walk my dog, exercise and go for country walks, but the pain is too bad after a few minutes.

I can't see any joy in living to an old age if this is only going to get worse.

Are you sure you will never get better ?

I've had every RSI you can think of, occasional acute injuries. Literally I have chronic issues in my ... eyes, neck, back, shoulders, forearms, wrists, hands, achilles tendons, PF, ball of left foot, knees... possibly something brewing in the hip. These things flare up & get better. So far I do get better & can currently do stuff OP listed. Give it time & see how much you can adapt, presume your body can get better, you want to keep mobile as you can in meantime. Can you swim?

ps: I am much older than OP. I was xrayed for arthritis but apparently didn't meet the threshold, few yrs ago.