Update to the update of the physio :(

Everyday living
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Well, that was impressive. Not.

The so-called “expert” had me walking up and down the corridor a couple of times, with skirts hitched up (I know this drill off by heart, as I went through it countless times before diagnose).

Told me nothing I don’t know: that I have pronation (inward rolling gait), but that it’s “not too bad”, a slightly twisting gait, caused by calf tightness, but also “not too bad”, and in short, nothing that would explain the pain.

No custom orthotics for me, but they’re going to order some off-the-shelf ones and put them in the post, to see if it helps - sounded more like hope than expectation.

Otherwise just calf-stretches. Same old, same old.

I came out really feeling as though perhaps I’m exaggerating the pain, or even imagining it, as apparently there’s nothing physically to explain it.

I’m left wondering if it might be nerve pain, but I’m assuming, if that were the case, heat, muscle relaxants (baclofen, diazepam) and conventional painkillers (codeine, paracetamol) wouldn’t touch it.

They do, but just not very effectively any more, or for long.

Am I making a fuss about something that’s not really a problem? I know I can walk miles, so I really can’t be that bad, if it isn’t stopping me walking. But it’s making me miserable. And it’s bad enough to wake me at night, and keep me awake, sometimes, unless I get up and take something.

A pain enough to do that isn’t trivial, is it? Or is it? I’m wondering if I should just learn to count my blessings, and not complain about something everyone agrees is medically inexplicable. I feel right back to ten years prior to diagnosis, when, with no specialist gait analysis or anything, I was made to walk up and down a corridor, told: “It looks fine, but try these insoles anyway” (off-the-shelf ones, just like today). I thought, now I was diagnosed, things would have moved on, and I would have got past: “It looks fine, but try these insoles”. Obviously it’s not fine, or it wouldn’t have been getting worse and worse for years. Do you think it’s worth paying, privately, for specialist analysis, and not just somebody watch me walk down a corridor?

Tina

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oh sorry that this has been disappointing Tina, I know you were hoping after the physio yesterday that this referral might explain things. Don’t know what to suggest really except to say if it’s pain you feel it’s pain you have - you are not imagining it! My only other thought is try to get a referral to a pain clinic maybe - I think through GP or MS nurse? Good luck x

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Well that sucks :frowning: Is there not a spasticity clinic at your local hospital? They should be able to help. If not, how about trying an experiment and asking to try gabapentin or pregabalin? It wouldn’t be the first time that someone needed a combination of baclofen and a neuropathic painkiller to deal with “mysterious” symptoms (eg I need to both to quash my spasms). And if it doesn’t help, at least you’ll have ruled something out. I’ve never seen anyone privately for this sort of thing so don’t know how it might differ or if it’ll be worth it. Hopefully someone else will know… Karen x

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Hi Tina… oh the same ole same ole is so depressing eh?

I think it might be nerve pain. I find that Paracetamol or Ibuprofin both help to an extent with nerve pain… or seem to anyway. Maybe it’s plecebo.

Actually one Paracetamol plus one Ibuprofin seem to help (I learnt this from a doctor who treats the old people here… he says it’s a very good combo).

Problem with going private is you might just find it same ole same ole again.

Don’t for one second let them make you think you are imagining it or exaggerating it. YOU know you have pain!

I wish they would invent that thing in Star Treck… a machine that meant the doctor could feel exactly how you feel and dx from that! Wouldn’t that be brilliant?

Take care hon,

Pat x

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Thanks, All.

I am disappointed, to say the least. Especially when I get soooo freaked out about the hospital appointments, they actually make me worse. Two days running at the hospital is really a lot, for me, but I was so hoping for some new insight that was going to solve the problem.

An experiment with pregabalin or gabapentin had occurred to me too, and in fact was suggested when the neuro already thought I was on too much Baclofen. But Sod’s law, it was more livable-with back then, and so I elected to stick with the status quo.

This is why I thought it might be worth seeing the neuro, to say that things have worsened, and I’m now open to giving it a go with the gaba.

But next scheduled appt. isn’t for another three months. I’ve got a feeling I might well end up struggling on 'til then. I’ve very little faith in insoles or extra calf-stretches (it’s not as if I don’t do ANY calf-stretches, and I’ve already been wearing insoles for years, at own expense). However, I suppose just go along with it all, and then I have a stronger case, when I say: “Look, I’ve tried all of it, and damn insoles aren’t going to fix it!”

Three months should be long enough to prove insoles and stretches aren’t the answer (or to prove I’m wrong!), so perhaps by then, I’ll finally get what I was asking for in the first place, which was a review of medication.

I did think I wasn’t happy with the route this was going, and that it wasn’t strictly a physio problem, but I really hoped they’d be able to see something the matter, and that I wouldn’t just be fobbed-off with calf stretches.

I’m not convinced the chap even understood the problem, to be honest. I explained I’ve been finding it really difficult to find and buy shoes, and he said: “Because they don’t provide enough support, you mean?”

And I said: “No, it’s not a problem with the support, it’s because they all HURT!” I find I don’t even get as far as considering whether they’re supportive enough, as most hurt too much for me to get on and walk round a carpeted shop, let alone go out in the street.

At least 19 pairs in 20 are not even borderline acceptable, and I can assure you the days are long gone when I was looking at high heels, or ankle straps, or pointy toes, or any of that. Surely, it can’t be OK, or fixable only with calf stretches, that I cannot even buy shoes?

T.

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