I’m losing my ability to walk

[Worried1987]

I don’t know if anyone has been in a similar situation to me. I was born with dislocated hips and have hypermobility syndrome so I have never been physically brilliant but my physical abilities have gone down hill. I have fallen down the stairs twice in the last 6 months and when I fall down it takes me a long time to recover again because my joints are weaker and more likely to dislocate. I don’t really know what to do. My children are little and need me a lot.

I'm so sorry to hear that @Worried1987 - have you seen a specialist at all to see why it is worsening? It might be possible it is related to something else that is having a knock on effect like a deficiency making you dizzy or not as spatially aware perhaps?

I hope someone with more knowledge comes along, no wonder you are worried.

Would it be possible to move to a flat? It sounds like stairs are making things worse and a hazard.

Are you under any sort of specialist at a hospital?

Can you rearrange your home or life so you don’t need to use the upstairs at present?

Had you had your hormones and bloods checked recently?

Pregnancies and little children are exhausting and take their toll.

Could you ask for a well person check up on the nhs? If you’re over 40 you can ask for one automatically. They run some blood tests.

and perimenopause can start on your 30s. A loss of estrogen may be enough to cause weakened joints maybe?

Are you able to exercise? Or do you have physio or similar?

@Worried1987 I'm really sorry to hear that, especially as you have young children.

are you able to move to a bungalow or maisonette?

Are you under a Specialist?

I too was going to ask if you are under a specialist? Have they ruled out deficiencies such as anaemic, diabetes, thyroid, Vit D deficiency etc? How old are you? How old are you kids?
Would moving to something on 1 level be doable, or in the future? A close colleague has hypermobility and unfortunately her symptoms just got worse with age. She had to take medical leave/retirement at 40 because she could no longer, safely, do her job- which was mainly office/desk based.

@BonifaceBonanza

probably not with 2 young children 🥲

Are you under a particular consultant you could ask for an urgent appointment/assessment?
Find a private physio who should be able to work on some exercises with you?
Install some grab rails around the house, especially the stairs & bathroom.
Do you have any warning signs you are about to fall? Or do your legs just suddenly turn to wet spaghetti with no warning?

As pp said hormonal changes can increase joint laxity. Definitely worth getting checked.

There are also various supplements out there (collagen, Vit D, Vit K etc) which are supposed to help people with hypermobility including EDS, I don’t know if they work but may be worth a try.

Pilates to increase hip and core muscle strength should help but appreciate exercise is risky if you are hypermobile, ideally you would need a good teacher to make sure you do it correctly, and it’s hard when you are already injured.

I paid for a vit D3 injection last week actually as it wasn't offered on NHS despite me being borderline on full bloods. It was £40 and should last 3 months, by which time we will have had more sun...

There is a great movement therapist for hypermobility called Jeanie Di Bon… she has lots of brilliant videos on you tube which explain ways to help improve hyper mobile joints.

Do you have a local falls team? Ours makes different recommendations depending on the reason for the falls, but it can end with referrals for specialised exercise groups or referrals for stair lifts. There are grants available to help fund them.

Have you made sure you are getting medical advice?

I am not under a consultant at the moment. I go through cycles of being referred to them doing a bit better then they say there is nothing more we can do then they discharge me.

I do think it is partly hormonal because I have got much worse since I had to stop breastfeeding the baby.

I have done Pilates in the past and it has helped but I think I would struggle to do much at the moment. I can’t move to a flat or stop us the upstairs or the house.

Sounds like you need rereferring to Rheumatology. Are there any signs before you fall as hypermobility has a comorbidity that needs ruling out.

I had specialist physio and acupuncture via the NHS for hypermobility just before covid started.

Hope you find some help as it must be difficult with small children.

I'm sorry if you have EDS, my daughter has been diagnosed with it. It dreadful how it affects the body, I've no answers but just wanted to say I understand what you're going through.

Do you ever use a wheelchair or power chair at all? I obviously recommend you try all the suggestions pp have made to try to keep you ambulatory if at all possible. However my DP had a genetic condition (not the same one as you but also affecting joints) and started needing to use a powerchair for going outdoors in his 40s, when we had a toddler. He tried everything not to but sometimes the body just can't do it any more.

I know that's not what you want to hear but what I wanted to say is that once he had adjusted psychologically, which did take some time, it was actually a really positive thing. Instead of struggling with pain, worry and exhaustion every day he could actually enjoy days out. Days out with a powerchair took planning but then we were already having to plan carefully as he could only walk a certain distance and at quite a slow pace. Our biggest dread was having to move house but because he wasn't wearing himself out walking during the day we were able to stay in our house although he had to do stairs sitting down (have you tried this, there are particular techniques?). It's not all or nothing either, on a good day he would still walk to the local shops and he never used a chair inside the house.

And remember: your children need you, but they don't need you to be able to walk. There are lots of disabled parents out there and lots of accounts you can follow to see how people with disabilities adapt. We had a young child while all this was going on and once we got creative there was nothing he couldn't do parenting-wise (except baby wearing!).

I have never used any kind of mobility aid. When I was pregnant the physiotherapist recommended I tried crutches but I couldn’t use them.

The problem with crutches in our experience is that you can't use your hands with crutches so actually makes a lot of things harder, especially parenting-wise. I'd really recommend getting on the list for an assessment because even if you decide not to go down the wheelchair route the waiting times can be horrendous.

I have the same conditions - try the Muldowney physio protocol for EDS, it's a book so you could do it on your own. The program has a very slow ramp up and is gentle, but I found it helps.

Is this the Muldowny protocol. I will give it a try. It is interesting that they think swimming is bad. I can swim but my upper body strength is dreadful

https://www.ehlers-danlos.com/wp-content/uploads/2022/10/GLC_2022_Kathleen_Kevin_Muldowney_The_Muldowney_Protocol.pdf

Crutches were terrible for me as my arm a quite weak and you can’t carry anything.

If you are falling, chase a referral for a PoTS diagnosis as they often go together.

You don’t say what specialist you have seen. Is it a rheumatologist?

I have recently had my blood pressure tested and it is normal so I am not sure about POTS because I fall because my joints can’t support me.

Specialist physio.

You may be able to access some through the NHS if you get a gp referral. I got a whole four sessions but they did give me a whole load of info that I was able to keep using.

Some areas also have charity provided specialist classes for people with disabilities like this. That's what I now go to weekly.